A Cookie A Day

Hailey's Visit at DeVos Hematology and Oncology

2011-10-28T20:33:00.000-05:00

Hailey's Visit went well. We arrived on the 10th floor and they sent us downstairs for a chest x-ray.

We got into a room - a wonderful room with a whole wall of windows. The view on the 10th floor is spectacular. Two nurses came in to draw Hailey's blood and it went pretty well. Much better than at Holland Hospital.

The Doctor saw us next and she got a full History of her night sweats and I gave her a full report of every ache and pain Hailey has talked about in the past month - Anything I could think of.

The blood work, including sedimentation rate came back clean. We are still waiting to hear back on Thyroid results, Mono and Epstein Bar. Her X-ray came back clean.

The Doctor says her sweats aren't normal. She thinks the likelihood of it being Lymphoma are very slim. However, she will call us on Monday with results and will want to know if Hailey continued to sweat this weekend (She was dry last night and so far tonight). If she does have night sweats again, they will send her for CT scans if the rest of the blood work comes back normal.

The Doctor thinks it may well be a lingering Virus, taking its time to clear out of her system. Since Hailey seems so healthy otherwise, I feel that it is a reasonable and very probable conclusion.

Matt goes for his MRI on Monday.

Let's see how things go this week.

Matt's 2 years post Cancer CT Scan Results

2011-10-19T18:50:00.000-05:00

Matt's CT was clean: Good News!

When Matt told the Dr. that he's been having difficulties remembering things and keeping time lines straight and had more difficulties than usual spelling (he is dyslexic), the Dr. ordered an MRI (Monday Oct 31st). He says it's unusual for the brain to be involved with Hodgkin's, that he's only seen it once with a patient who hadn't received treatment until 5 months into it. But he mentioned that Matt is at greater risk of certain other diseases due to the cancer and chemo.
If they don't find anything wrong physically, they will run neuro and psych test - having him answer questions and see how and what he's having trouble with.

Hailey's appointment with DeVoss Cancer and Hematology is next week Thursday. I'm relieved to be able to say that the last two nights she's been pretty much completely dry. A little damp last Sunday.
I asked Dr. Gribbins what he thought. I was wondering whether I should cancel the appointment if she continues to improve. He said not to cancel the appointment if she improves, cause it's a good thing to rule out and not to worry, they won't run a CT unless it's necessary.

That makes me feel better - It sucks to feel like a paranoid mother - but honestly, if I ignored this and found out later that it was Hodgkin's I wouldn't be able to justify having ignored it... and that's that. Good news is, he thinks too, that it's most likely from her Virus. :)

I'll post more next week.

Hailey?

2011-10-16T10:12:00.000-05:00

Hailey, our daughter, 7 years old had a fever on September 27th, 2011. The next day she threw up at the breakfast table, shortly after my family sang Happy Birthday to me. That day when I called the pediatrician's office to let them know that Matt was bringing a urine sample to the lab, they said they wanted Hailey to come in for a strep test, since she mentioned yesterday evening that she had a sore throat earlier in the day.
Matt was taking a urine sample to the lab, because she has Urinary Reflux and when she gets a fever without other symptoms or with vomiting we check to make sure she doesn't have a urinary tract infection. At the doctor's office the strep test came back negative, but the doctor noticed blisters/ulcers in her throat and diagnosed her with herpangina (it's related to foot, hand, mouth disease without the blisters on hands and feet - kind of like chickenpox of the throat). I took her home and her fever went away that afternoon and did not return. She never did complain of a sore throat.
The next evening, I went to check on both girls as I always do before going to bed and on the way downstairs I noticed that my pants were wet, where I was sitting on Hailey's bed. At first, I thought she had an accident and I got her up to go potty and I changed her sheets and blanket. Then I realized that her undies weren't that wet, but her undershirt was drenched and I didn't smell any pee. It was sweat.
The next two nights she was also very wet. I had made her sleep in underpants and undershirt and only had a sheet on her. Sunday night I finally put pull ups on her just to be sure she wasn't having accidents. I opened her window (it was in the low 50's that night) we set the furnace down to 69 (we usually keep it around 71). She was soaking wet again that night and her pull ups were dry.
I called the Dr. office on Monday and we got an appointment that evening. Matt met me with Hailey at the dr office after work. He thinks it's from the virus she had. However, he sent us to the lab to run 3 different blood tests (CBC, something lactase and I can't remember the third). They also took x-rays of her feet, because she's been saying her heels hurt when she walks on them, not at night though, and during recess she tried to find places to sit, because they've been so sore.
That night (Monday) she wasn't very wet. A little sweaty but not bad. She has always been a bit of a sweaty kid at night - her hair is often wet. I've thought it to be unusual before, but when kids are little their bodies aren't really good at regulating their temperature yet. However, she should be growing out of that by now.
Next day, the results came back normal for blood work and x-rays. I called the office to let them know that Hailey had 3 big spots of pin needle bruising on her back and that she can't recall getting hurt. He wasn't concerned, and said I should call back if she has unexplained bruising more frequently. Matt thinks that Sylvia was playing horse with Hailey and was riding her back :) I'm thinking he's right.
Again she was fairly dry Wednesday night. Thursday night she kept sweating between 9 and 11pm. Her body, arms and hand left wet spots on her sheets. I took pictures.

Friday morning, I call Dr. Gribbin's office to see what he thinks. The office called me back leaving a VM on my cell phone saying that they don't specialize in Pediatrics and that I should call DeVoss Pediatric Hematology and Oncology if I have questions. When I told Matt about this, he said I should call the Pediatrician and go through Hailey's doctor, so I did. When the nurse called me back she said Dr. Davis was waiting to hear back from DeVoss. She expects to have heard back from them by Tuesday. The Dr. called me personally that evening. First, she asked me to describe Hailey's night sweats. I told her everything again. Then she told me that DeVoss said that they would have run the same tests at this point and that we will wait and see and I should call back mid to end of next week if she continues to sweat and we'd move forward then. CT scans expose you to a lot of radiation, and if it's not absolutely necessary you should avoid this. Unfortunately, if there aren't any obviously visible or palpable lymph nodes it's the only way to see if there are any enlarged lymph nodes elsewhere. Lymphoma doesn't show up in blood work.

Ok, I'm good with that - after all it could still be from the Virus she had. That night she was wet. Sat and Sunday she was dry and when I say dry I mean her head was sweaty and body clammy, but her clothes and sheets weren't really wet. Monday night her top sheet needed to be changed and she had sweat droplets on her arms, legs and chest. Her shirt was wet around her stomach. Tuesday dry. I didn't call the office on Wednesday bc I'm worried they are getting annoyed with me. I tend to be a worry wort and probably call the office more than the average parent I imagine and besides, they said mid to end of next week and she wasn't wet Tuesday night. Wednesday she was sweating again... this just isn't normal. She still only sleeps in under shirt and with one sheet.

I called the office on Thursday morning and left the message with the nurse. The nurse called me back in the afternoon saying that the Dr. is referring Hailey to DeVoss Pediatric Hematology and Oncology. I asked how long it would take to find out when our appointment is. And she said to call back on Monday if I hadn't heard anything yet. So, today I sit here and wait, because I didn't hear back on Friday. I'm actually kind of surprised they wouldn't run some other tests i.e. diabetes, thyroid etc. before sending us to Oncology. But hey, I'm not complaining. At least they are doing something. It's not nearly as scary as it sounds either, because Hailey does not appear sick in any way shape or form. She just sweats at night. No fevers and she has appetite.

I know it can't be normal to be sweating like that, but I wouldn't be surprised if they didn't find anything - and that's of course what I'm hoping for.

Matt had a follow up CT scan last week Tuesday and is going to get results from Dr. Gribbin this Tuesday.

What are the odds that Matt's child would also have lymphoma? Well, I've read it's only 5 times more like for a child of someone who had lymphoma to get lymphoma than someone out of the general population.

http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/generalcancer/pdf/facts.pdf

Children. Lymphoma (Hodgkin lymphoma, 7.2 percent;
NHL, 6.6 percent) is the third most common cancer in
children 0-19 years of age.
• In 2010, children younger than 15 years will constitute
3.8 percent of all cases of Hodgkin lymphoma expected
to be diagnosed and 4.3 percent of all NHL cases
expected to be diagnosed. The number of cases expected
to be diagnosed in children younger than 15 years is 460
for NHL and 406 for Hodgkin lymphoma.
• The incidence of Hodgkin lymphoma among
young people under 20 years was 1.2 per 100,000
children in 2007.

So, I will hopefully find re-assurance withing the next week or two that Hailey is truly as healthy as she appears :) and of course I will post Matt's results from last week's CT scan Tuesday evening.

26. MORE GOOD NEWS!!!!

2010-10-13T19:50:00.002-05:00

Well, it has been a year since Matt's PET scan came back clean. Since then, Matt has had two more clean CT Scan's. We just received news yesterday that his 2nd CT scan came back negative - clean - everything is at it's normal size. YEAH!!!!!
To those of you reading this blog hoping to receive some hope for a good outcome in your life - Here it is. There is a VERY good chance that life will return to normal after chemo... after Hodgkin's lymphoma. Keep up a positive attitude and you too will get through this.

Take care,
Karin

25. Matt's LAST Chemo treatment (#12)

2010-01-17T09:07:00.000-06:00

Sunday, January 16th, 2010

Matt and I went to his last chemo treatment on Tuesday, January 12th, 2010. We visited with the oncologist first and I was surprised when he said: "Well, I'm scratching my head a little on how to proceed from here. I think we'll schedule a visit with me for a month from now and then do a PET scan in 6 months." Hm, when we first started treatment, the Dr. said that we'd have a PET scan 3 months after his last chemo... which would be nice, because confirmation that everything is still "negative" in 3 months from now would be better than having to wait 6 months. So, I asked him about the change, and his response was: "that was before he went into remission in only 3 months. That doesn't usually happen. I'm not expecting to see anything come back in only 3 months from now." I'm okay with that, I guess. I understand that exposing Matt to PET scans is not a good thing, since it exposes him to radiation that could cause cancer... So, the verdict is to retest in 6 months unless any symptoms (i.e. night sweats, weight loss) re-appear, then we'd scan immediately. The port will stay in for a year, and needs to be flushed every 6-8 weeks. That means they have to access it and push some anti-coagulants through it.

So, it's Sunday after Matt's last chemo. He is feeling quite well and for the first time in about 8 months, we can look forward to him feeling better and better as each day goes by without having to start over in 2 weeks. NO, now he really will be getting better and better and in 3 weeks and in 5 weeks and in 8 weeks from today he'll be better and better and better yet. What a relief!

Again, come join us at Wally's in Saugatuck on Saturday, January 30th. We'll be there at 8pm enjoying a fun night out with family and friends, celebrating Matt's awesome recovery.

Hope to see you there!

24. Chemo # 11

2010-01-04T18:52:00.002-06:00

Monday January 4th, 2010

Matt had chemo treatment # 11 last week Tuesday as scheduled... we were expecting New Year's eve to be a bust since it was on Thursday. However, Matt handled the treatment really well and we were able to celebrate New Year's with my mother and Roger. Mom made her famous homemade Pizza and we played Wii with the kids until it was time for them to go to bed. Matt took an hour to rest in bed before we played cards up until midnight and a little past. It was a very nice low-key New Year's eve.

Matt has had an awful cold for the past two weeks now. It's his first "sickness" since he started chemo about 6 months ago, which is a miracle. He's hanging in there. It is getting better, but only slowly. He hasn't had a fever and was able to continue with chemo last week.

Next week Tuesday is Matt's last chemo treatment!!!! YEAH!!!

We will be celebrating his awesome recovery on Saturday, January 30th starting at 8 pm downtown Saugatuck. Meet us at WALLY's for some drinks and fun! We'd be very happy to see you all there celebrating with us!

23. Chemo # 10

2009-12-19T21:21:00.002-06:00

I must say, although this wasn't a piece of cake... incredibly enough, this time was a little less worse. (That probably wasn't grammatically correct, but said it best.)

Matt was able to go to Hailey's X-mas sing-a-long at the elementary school and even go to Hailey and Sylvia's X-mas dance recital on the Friday after his Tuesday Chemo. That's quite impressive and wonderful. The girls were spectacular and awfully cute if I may say so myself.

Next week is X-mas and we are very excited. It should be an excellent week! Starting tomorrow with Sam's Birthday party at Crazy Bounce and then lunch at Wild Chef... Thursday, X-mas eve at Crystl's and X-mas morning at home. X-mas day afternoon at Grandparents Engel's and Saturday and Friday off to play with all the new toys! OOoooh to be a kid again!

Happy Holliday's - A very MERRY X-mas to YOU!!! Hope you are all doing well and enjoying life and your loved ones - cause that's all it's about!

Love,

Karin

21. Chemo Treatment # 9

2009-12-03T20:17:00.001-06:00

Thursday December 3rd, 2009

So, Matt has had chemo treatment # 9 and the reason I'm not writing about it until today is because Matt's last treatment (# 9) was delayed from Nov. 24th until just this past Tuesday (December 1st).

Yes, Matt did not have to have treatment the Tuesday before Thanksgiving nor before his Birthday (Friday, November 27th) nor before our annual X-mas tree hunt following the day after Thanksgiving.
Yes, he was able to delay treatment for one week - bringing his treatment schedule back to where it was before it was delayed due to his low white blood count before treatment # 8.

That means X-mas, too will now land on Matt's good week. We are excited.

Of course you wonder if delaying treatment for a week is a smart thing to do. Yes. So did we. But we asked Dr. Gribbins what he thought. We told him if it was at all a concern we didn't want to delay. He said it was absolutely no problem. When they were running the studies on ABVD they didn't have the white blood count boosters and had to delay treatment due to low white blood counts often and treatment outcomes were good. Besides, Matt's last PET scann was clean!
So, we decided that the Holidays and Matt's birthday were important to us and we delayed treatment.

He is doing o.k. after treatment # 9. As usual he is nauseous, taking his anti nausea meds to prevent getting sick and is tired and sleeping all day and exhausted and does not want to do this EVER AGAIN!!!! NEVER AGAIN!!!! EVER!!!!

But, in my mind he has only 3, I repeat 3 treatments left and then will be done with this gruesome ordeal and then will back to growing his eyebrows and eyelashes and manly chest hair back! Yes! ONLY 3 more treatments and our life can get back to normal!

By the way, I'm sick again, this time on antibiotics for two weeks for a sinus infection. Ugh, I'm glad it's me and not Matt, but seriously, my immune system seems more off than his. Thank goodness he hasn't caught any of my illnesses.
At this point, they found me to be slightly B12 deficient yet in the normal range. Apparently enough to receive Vitamin B12 shots once a week for the next 4 weeks and then once a month for the next year. What I want to know is why I am B12 deficient. (They are also running a Vitamin D blood test, but I won't get results back until next week).

Matt did get the H1N1 shot last week Tuesday, after seeing Dr. Gribbins (instead of chemo). The girls and I received our H1N1 shots on Tuesday December 1st. Matt had no side effects at all. Sylvia and me neither. (I was already sick as of last Friday night, so my sinus problems have nothing to do with the H1N1 shot). Hailey got a big read spot about 4 inches in diameter around the injection site which was sore the day after, but is fine now.

Our Christmas tree is up and Matt got all the x-mas lights up outside. We are excited about the Holidays!

Hailey did such a great job in the Nutcracker and we are looking forward to seeing Hailey and Sylvia perform in the winter recital at Saugatuck High School at 6:30pm on Friday, December 18th. Tickets are available at the door for $5. Come and join us for a spectacular show put on by the Dance Asylumn. Get there about a half hour early for good seats.

Happy Holidays to you and yours!!!

20. Chemo Treatment # 8 successful

2009-11-14T10:18:00.000-06:00

Saturday, November 14th, 2009

Matt received chemo treatment # 8 on Tuesday. His white blood count was back to an acceptable range. Although the treatment went as usual, Matt threw up for the very first time that evening. His skin still keeps getting very sensitive and this time he said even his tongue felt sunburned.

Matt is going to deer camp tonight, celebrating the opening of firearm season and is looking forward to being able to hunt during his "good" week all next week.

Hailey will be performing in "the Nutcracker" at Saugatuck Highschool at 8:00pm on Friday and Saturday night (11-20-09 & 11-21-09). Tickets are sold at the door, so come on and join us if you'd like! Come early to get good seats.

19. Chemo #8 postponed

2009-11-04T18:25:00.000-06:00

Wednesday, November 4th, 2009

Matt was supposed to receive chemo treatment #8 yesterday, but was sent home after they discovered that his white blood cell count was too low. Chemo treatments, which attack fast replicating cells, attack white blood cells among other "good" body cells. Having a low white blood count makes him more susceptible to infection - which makes the fact that both the kids and I got sick and Matt didn't, a testimony to just how careful we have been not to expose him to our germs. Yeah Team Engel!

Matt receives a white blood cell booster after each chemo treatment. Recently, he has switched from Neulasta to Neupogen. Neulasta was making his bones very sore and his skin very sensitive. Switching to Neupogen was supposed to spread out the medication from a single dose to 3 doses over a 3 day period, which actually helped a little. Unfortunately, the Neupogen shots aren't as effective as the Neulasta shot was and Matt's white blood cells dropped so low, that he couldn't continue with his chemo treatments this week.

What is unfortunate, is that the one week delay is now causing Thanksgiving, his Birthday and Christmas to fall on his bad week. Ugh.

Matt is getting 3 more Neupogen shots this week hoping to restore his WBC back to a safe level so he can receive chemo next week. Then he will go back to the Neulasta shot.

We hope all goes well and that Matt does not get a fever/infection... which could land him in the emergency room at St. Mary's in Grand Rapids. Keep your fingers crossed.

18. Good week before chemo # 8

2009-10-29T13:52:00.002-05:00

Thursday, October 30th, 2009

So, I don't know if the kids had swine flu or some other virus last week... but now I am sick. This is day three with a fever, aches, headache and a nasty cough. I would say I have swine flu. Since, it feels like the flu and I was vaccinated for the seasonal flu. But, I won't know for sure, since they aren't testing people.

Anyway, Matt came home last Saturday. The kids had been fever free for 24 hours and I was feeling well. Monday, at work I started feeling not so well. By Monday evening I was getting a fever and my body ached all over. I went to bed early. Tuesday, I called in sick. (I can't believe I still have a job!) Wednesday morning I woke up feeling decent and had a fever and felt awful by the time I got out of the shower. But, I figured, I could stay in my cube and get some work done and go home early. I lasted an hour and a half. At least I got some important work done and then I didn't feel so bad staying home. Thursday morning, I felt awful again. I've had a temp most of the day even with fever reducer. My cough suppressant is working today, but my chest is really congested. I almost think I'm getting worse not better.

Where is Matt through all this? Unfortunately, he was at home with us from Saturday through Tuesday morning. Tuesday, Matt went to the east side of the State to go duck hunting with his dad and uncle Dave. I'm glad he's out of the house now, but I'm worried he might still have gotten infected by me over the weekend, before I showed symptoms. I think he'll be going back to his parents if I'm not feeling better by tomorrow.

The kids are doing well, my mom and Matt's mom have been helping out with them and I get them back in the evenings.

Also, Omi, my grandma whom I lived with, when I moved to the States my senior year, had a stroke late last Thursday night. She's been hospitalized at Holland Hospital and soon will be transferred to a nursing home for rehab. She seems to be doing well, her right side had been affected, but she's been able to lift her leg and her speech is getting better, too. She had developed Pneumonia during her stay, but I guess that's getting better, too.

17. PET SCAN RESULTS

2009-10-20T15:55:00.000-05:00

Tuesday, October 20th, 2009

AMAZING!!!!
Matt's PET Scan came back clean - absolutely clean!!!
...after only 3 months of treatments, even the Oncologist was surprised. He said he figured that it would be pretty good, since Matt had been doing much better compared to the first time he saw him... but he honestly didn't expect it to be CANCER FREE. He said that often you get a few spots that aren't really clear and they him and haw... but Matt's scan is definitely clean.
So, what does this mean? It means Matt is in remission and will have 6 more treatments and another PET scan three months after his last treatment.
Dr. Gribbin says that if the scan is clean now, it will be clean after 6 more treatments, therefore we wait 3 months after his last treatment. Then he'll continue to get PET scans every 6 months initially and then once a year for the next 5 years. After that he's considered cured!

So, what does this mean to me? Matt is the most awesome cancer fighting machine in the universe!!! I really got myself a tough little nugget there. He knew the scan was going to be clean. He didn't have a doubt. It's like one day he made up his mind that he doesn't "really" have cancer. He once said: it's more like I have chemo treatments to get through, not cancer. And look, he's right.

Honestly, when I got back to the car after I left him at the office for chemo following the Dr. appointment, I almost started crying. It is such a relief. I have to admit, I had braced myself for the worst.

Also, we got back from our awesome Vegas vacation late last night, after getting the phone call from Douglas Elementary (while waiting for our flight from Vegas to Denver) that Hailey is sick and has 102 degree fever. The school called Grandma Margie after I told them I'm on my way home from Vegas. Mom told me that Hailey was sitting in a waiting room with a mask on. She said it looked like a whole bunch of kids had been picked up already and that they closed 12 schools due to illness in the area... swine flu?
The girls spent the night at my mom's. I visited them in the morning before the Dr. appointment without Matt. Sylvia had now also developed a fever. We asked the doctor if we should keep Matt away from the girls. The timing is perfect. People are contagious up to 24 hours before the first symptoms of the flu. Since Matt has not been around the girls, the Dr. recommends to keep it that way. He says it'll take Matt twice as long to get over the flu. Otherwise, he wasn't too concerned with complications resulting from getting the H1N1.

So, I'm at home with the girls (Sylvia got up to 102.4 axillary this afternoon) and Matt is now resting up after chemo treatment # 7 of 12 in a guest room at his parents house. I've called the girls pediatrician to see if we can get Tamiflu for the girls, but haven't heard back from the office yet. Since the girls aren't throwing up and don't have diarrhea, the nurse I talked to said they may just have a cold/cough. That'd be nice, but the high fevers concern me and aren't usual for them with mere colds. Perhaps we're 'lucky' and it's really just a 'high fever cold/cough'. So far so good.

Vegas was AWESOME!!!! Beautiful bride and a handsome groom. Good food - nice hotels - incredible people watching - great company - just awesome. I will have to post some pictures later.
Matt was 100%. Actually, he out-walked ME! That's impressive. He never once complained (I did - my hips hurt like crazy from walking on concrete all day for 3 days straight) and he kept walking like the energizer bunny!! We were really good about using hand sanitizer, washing hands and not touching hand rails. I tried opening the doors instead of Matt and hopefully it worked - we'll see.

I've just got to say it again: Matt is cancer free!!!
Now, he just has to get through the rest of his chemo treatments. BTW, he hasn't lost all his hair yet either... he really is a lucky little booger.

I love you Matt! :o)

16. Matt's 2nd PET Scan (no results yet)

2009-10-14T10:41:00.003-05:00

Wednesday, October 14th, 2009
Matt had Chemo # 6 last week (Tuesday Oct. 6th). It went as usual.
However, on Wednesday he didn't have to leave the house to get his Neulasta shot. Nope, instead Matt stayed home and gave himself the Neupogen shot. I'm so proud of him. Initially, Matt said it is much the same as Neulasta, but then he realized that the side effects (bone pain and very sensitive skin - kind of like a sunburn) only lasted half a day for three days, while he was giving himself the shots, instead of three whole days. Also, since he didn't have to leave the house the day after chemo, he wasn't feeling nearly as wiped out on Wednesday evening when the kids and I got home. Matt was still really exhausted through Friday and was doing pretty well by Saturday mid-day just in time for Hailey's Birthday party.

Hailey's party started at 11 am with her friends arriving to play games, eat hot dogs, cake and ice cream. Followed by grown-ups (our extended family) showing up by 1pm and the last guests leaving at 6:30 pm. What a loooong and fun day it was! Matt paced himself and did really well. It was good to see everyone that came. Thank you!

Hailey's actual birtday was Sunday, October 11th. She turned 5 years old!!! We took it easy and Hailey went to work on ALL 6 art projects she received as birthday gifts the day before. She loves crafts and can work on projects for hours at a time.

Tuesday, October 13th, 2009 marks what could potentially be Matt's half-way point. He has 3 months of chemo behind him and 3 more months to go, if the PET scan shows no sign of cancer in Matt's body. We won't get results until next Tuesday when we meet with Dr. Gribbin, before Matt's Chemo #7 out of 12. Matt chose to have the radioactive sugar injected by IV rather than have his port accessed, which did not run so smoothly last time. The injection went without incident. Matt felt a little queezy right afterward, which was probably because he had to be on a very low carb diet all day Monday and hadn't eaten since Monday evening. Matt could never do the Atkins Diet. :0)

The injected sugar had to circulate through his body for about an hour and a half before he could be scanned. The scan takes another 30-45 minutes.

Note: cancer cells use a significantly larger amount of sugar than regular cells. Therefore, starving cancer cells will take up much more of the radioactive sugar than healthy cells, creating 'hot-spots' in the PET scan image, indicating the extent of cancer in the body.

In the mean time, we are looking forward to our trip to Las Vegas for Julie & Nolan's wedding. We are arriving in Las Vegas late Friday evening and comig home even later Monday night. Matt and I are so excited. It's our first time to Vegas. My mom and Roger are taking care of Hailey, Sylvia and Kaiser. Thank you so very much!!!

Then, hopefully we'll get really good news on Tuesday.

15. The night before Chemo # 6

2009-10-05T20:23:00.003-05:00

Monday October 5th, 2009

Hello All!
I am realizing that I have a tendency to document on the days that Matt is doing not so well, which tells a biased picture of the story. However, you must understand that when Matt is doing well we are living it up! ...and I tend to forget that Matt has cancer and I don't even think about posting on the blog.
So, I am sorry that I only update the blog when Matt is doing not so well, which is the first week after his chemo treatment.
Hence, I'd like to make the statement that when you aren't seeing new posts think of it as: "Yeah!!! Matt is doing well and the family is having too much fun, to bother thinking (writing) about cancer! YEAH!"

:0)

We really have had a wonderful week and a half:

Saturday, September 26th, 2009

Matt's Raiders had collected a grand total of $1,343.00 for the Leukemia and Lymphoma Society!! Go Team Go!

The team gearing up for a long walk through Chicago!

The team ready to walk.

The balloons were all lit up. It must have been beautiful!!!

Light the night...

Unfortunately, it was on the weekend after Chemo, which meant that Matt was still very exhausted and we were not able to attend. Instead, we took it easy.

We went to Marro's with Mom and Roger, Crystl, Ryan and the boys, for my Birthday dinner on Sunday evening... And for ice cream after. We had a great time! (Unfortunately, we didn't bring a camera - bummer!)

Monday, September 28th, 2009

It was my 33rd Birthday and I got to eat birthday cake for Breakfast, which Matt and the girls baked for me on Sunday, while I was out shopping for Hailey's birthday. Matt arranged a birthday morning the way I usually do for the three of them. In the past, Matt hasn't made a big birthday to-do for me in the mornings - this truely was sensational!!! I got everything I had wished for... within reason, anyway. ;0)
(I haven't downloaded pics off the camera, yet... I plan on posting some.)

October 2nd - 4th, 2009
Friday night, we celebrated Matt's Dad's 60th Birthday at the Squirrel Cage (below the Butler). The girls had a blast dancing wildly! Bryon came over after and we had a late night catching up on the 'important' stuff in life - you know, the little things.

Saturday, Bryon came over again, this time for a play date with the kids. They had fun and were completely tuckered out, the kids too.

Sunday, Matt cut a hole into our dinning room floor and moved the heat duct form right next to the garbage can, to in front of the slider. In the winter the heat hitting the garbage can created an ideal incubator for all kinds of stinky bacteria. GROSS! I'm glad that's taken care of.

Tonight, Matt ran out to pick up the last few things to run the exhaust duct from the basement bathroom outside. He almost seems desperate to get this done before he becomes incapacitated after chemo # 6, tomorrow.

Boy, this was just a quick synopsis of the last week and a half... and hopefully I will continue to find the time to report on more of the positive things going on in our life... because after all, there are sooo many wonderful days and moments besides the few days after chemo. Be assured that our days are filled with laughter and good times - the kids definitely get credit for most of both!

Love,
Karin

14. Second day after chemo # 5

2009-09-24T17:59:00.000-05:00

Matt's Raiders are now 4 team members strong! Matt's Aunt Liz has also joined the cause and will be walking with Matt's Raiders on Saturday at the Night the Light fundraiser. Matt's Raiders have raised $ 850!!! Way to go!

Matt is still not feeling well. I spent the last two nights in Hailey's room again. This way Matt gets some space and uninterrupted sleep. And it keeps Hailey from coming to our room and waking us in the middle of the night... she tends to do that more frequently on nights of Matt's bad week.

I'm tired. I stay up too late on nights when Matt goes to bed early. I need someone telling me it's time for bed! I think tonight will be an early night, though. And... I'm claiming my half of the bed back.

13. The Day After Chemo #5

2009-09-23T20:36:00.001-05:00

Matt is doing a bit better than last night. His sister Becky took him for his Neulasta shot today. The nurse showed Matt how to give the shot to himself. Next time he will be taking Neupogen, which allows Matt to take 3 smaller doses spread over 3 days. Hopefully, this will alleviate some of his bone pain and skin sensitivity he's been experiencing from the single higher dose Neulasta. Since he'll have to have shots 3 days in a row and driving to Holland when he's not feeling that well anyway is a big inconvenience, he will be administering the shots himself. Yikes! I'm glad I don't have to do that. I do not like needles in me or anyone else.

On a happy note: Sue's team 'Matt's Raiders' have now raised $625 for the Leukemia and Lymphoma Society!!! Go Team!
The team is now three members strong with Matt's mother Mary joining Sue and Bill at the walk on Saturday in Chicago.

If it weren't Matt's "bad week" we'd so be there walking with them! What fun that would be!

Follow this link, if you'd like to join the team in walking or make a donation in Matt's honor: http://pages.lightthenight.org/il/ChicagoL09/MattsRaiders

12. Chemo # 5

2009-09-22T22:01:00.000-05:00

Matt had Chemo # 5 today. We saw the doctor who adjusted Matt's chemo dosage based on his 25 lb weight gain since Chemo # 1. Matt will have his first PET scan since he started treatment, in 3-4 weeks from now. The appointment has not been scheduled yet. Hopefully, the cancer will be all gone. Then he'll have 'only' 3 more cycles, which are 6 more treatments = 3 months.

Matt is super tired. My mom made Pasti for us tonight - YUM! Thank you! Then Matt went to bed at 6:30 pm. I put the kids down at eight... and yes, I think Sylvia is over her pacifier. Yeah Sylvia! no crying tonight. It's night # 3 without pacifier for her. The last two nights were rough. She was up until past 11 pm the first night and past 9:30pm last night. But, her teeth are being moved forward by the paci and the dentist said the longer she uses the paci, the less likely her teeth will correct themselves.

Also, Sylvia started dance class. She is such a little pro after watching Hailey for the last two years. I'm proud of both of them. Hailey still loves Kindergarten and all her teachers.

I hope Matt starts feeling better soon.

10:00pm
Matt is feeling worse than ever. Usually he waits about 48 hours before he starts taking his anti-nausea meds. He took some after only 4 hours and is still feeling really ill. It's much different this time. I wonder if it's because they adjusted his dosage? I'll keep you posted on how he's doing tomorrow.

Sue Scott's Fundraising Page

2009-09-22T20:29:00.001-05:00

My Aunt Sue and Bill set up this Team in honor of my husband Matt Engel. If you'd like to make a donation to the Leukemia and Lymphoma Society, please follow the link below.

My Fundraising Page

Shared via AddThis

11. Matt's Raiders

2009-09-22T18:04:00.002-05:00

Matt's Raiders:

My Aunt Susie and Bill are walking at 'Light the Night' in Chicago this Saturday, a fundraiser for the Leukemia and Lymphoma Society.
If you want more information just go to: http://www.lightthenight.org/il/

If you want to join Sue in the Mission to wipe out blood cancers donate to the Leukemia and Lymphoma Society @ http://pages.lightthenight.org/il/ChicagoL09/SScott

Thank you Sue and Bill, this means a lot to us. What a great idea!

10. It's becoming a routine with a slight downward spiral...

2009-09-14T19:59:00.000-05:00

Monday, September 14th, 2009
I am having a hard time finding the motivation to update the blog.
I feel like I need to re-cap the last 4 weeks, but I don't really want to go back into the details. It hasn't been that bad - Don't get me wrong. But it is somewhat draining, trying to remember what has happened since chemo started. It has become somewhat of a routine that has a slight downward spiraling to it.
Matt goes in for chemo on Tuesday. On Wednesday he goes in for his Neulasta shot. It helps his bone marrow produce more white blood cells, which are getting killed off by the chemo. BTW, the shot runs $ 3,700 with chemo costing only $ 1,400 per treatment, you can image just how important this shot is in order to keep Matt infection free. Unfortunately, the Neulasta which is stimulating the bone marrow to produce the white blood cells, causes Matt's bones to ache all over. He says he has pain in his chest, sternum, hips and shoulders. Also, the chemo has made his skin very sensitive all over, especially the backs of his legs, arms, neck and back. His neck almost looks sun burned and that's what it feels like. He is more exhausted for longer periods each time.
Matt is such a good sport, though. He keeps his spirits up and pushes himself to stay active, when he can. He gets tired of being tired and is sick of feeling bad. He is so ready to get out of the house at times that he gets going just to realize, he can't quite do what he set out to do. Once he gets his energy back, he is in a good mood most of the time. Not that he's in a bad mood otherwise, he's just quiet. Sometimes, he gets a little down, but I'm actualy surprised how rarely that happens.
During Matt's 'bad week's' I try to take the girls out in the evenings and leave Matt alone. I think it's good for the girls to get out and have fun. It scares me to see the way Matt is on Tuesday evenings, Wednesday's and Thursday's - I wonder what the girls are thinking? Not that I'm trying to shelter the girls, but I want to show them a good time. I need it to. Matt is like a ghost around the house on those three days. He barely talks, which makes me feel like he's mad at me. Which he's not, but it 'feels' like he's giving me the silent treatment. I can't stand it. It's me - not him.
Anyway, the girls and I have had nice evenings out eating ice-cream, going to music in the park, going to the beach, playgrounds and for walks. We are keeping busy.
So, in summary: Matt has now been through 4 chemo treatments. That is one treatment every other week. He started chemo 7 weeks ago, tomorrow. He goes for his next treatment next week Tuesday. We are currently in his good week. Matt came to see Sylvia's first dance class today. She was so incredibly cute. Such a little performer! Afterward we celebrated at the Butler. It was so nice. We got home and Matt went to bed after we put the kids down at eight. This doesn't usually happen in the second week. He's usually feeling much better by now. It has me a little concerned that he is starting to feel week/fatigued/tired for longer periods each time. He has at least 8 more treatments to go. If each one gets worse, he's going to have less and less of a 'good week'.
He is also starting to dread Tuesday's earlier. Thursday night before the last treatment he said that the week hasn't been long enough. Sunday he said he's emotionally drained. It's a vicious cycle: chemo, feeling crappy, starting to get better, almost REALLY good, just to go back to chemo and start feeling crappy again.

Matt hardly complains though, so concider this me complaining for him... REALLY LOUD!

9. out of sequence...

2009-09-08T20:52:00.000-05:00

Tuesday, September 8th, 2009
It's taking me a while to get caught up to present day and I don't really want to ruin the sequence of events, however I'd like to let everyone know how Matt is currently doing, since that is ultimately what we all care about. It was a wonderful labor day weekend, on which I will elaborate more, when I get to this weekend in the sequence... but for now rest assured that Matt was doing very well (he had chemo today, so it was his 'good week' as we refer to the week before his chemo as opposed to the 'bad week' following chemo).

And yes... Matt completed the ropes course at John Ball Zoo Yesterday (Grand Rapids)! Go Daddy Go! ...as the girls cheered him on. We enjoyed it!

Also, Hailey was off to a wonderful first day of school/kindergarten! She is looking forward to going back tomorrow! Yeah Hailey!

8. The two weeks following chemo # 1

2009-09-04T21:51:00.000-05:00

Thursday, July 30th, 2009
I was planning on staying home from work today. Not knowing what to expect I wanted to be there for Matt if he was getting sick or had to go back to the Dr. office or needed another anti-nausea prescription. We didn't know what to expect, but since he was just sleeping, I decided to go to work at 10:30am. Matt got annoyed with me because I kept calling to check on him, which woke him up. Too bad, I know he needs his rest, but I need to make sure he's fine. ;0)
Which he was. He said he felt like his heart was racing when he got up to go to the bathroom once, but that was all.

Friday, July 31st, 2009
We are scheduled to go for a heart test at the Holland Hospital. I went to work in the morning and then picked Matt up for his appointment. Honestly, we thought Matt was going to walk on a treadmill hooked up to some heart monitors. Nope. They are so much more sophisticated than that now. Which we realized once they sent us to the Radiology department. Matt was once again injected with a radioactive dye and then they started taking images of his heart. The computer can calculate the ejection fraction just by "watching" the heart beat. Fascinating. I got to stay in the room and watch. Matt was happy they didn't access his port. His results were 64% (normal is 50% or greater) and this is considered his Pre-treatment result. He will have more of these test to make sure the drugs aren't damaging his heart.
I'm a little concerned because the drug pamphlet they gave us for the bleomycin said he should be getting lung tests, too. But Wendy said that they weren't ordered. They will do the lung test if Matt experiences any breathing difficulties.

We got home after picking up the kids from my mom's house and Matt went back to bed. I get stir crazy at home when Matt is so tired and in bed all the time. So, the girls and I went downtown Saugatuck for Ice-cream and then we went to the play ground. Oh how they love that. On our way back to the car (I parked on top of the hill on Mason, at my grandma's house) the girls were so cute: they kept stopping to hug these humongous trees! and they'd kiss them, too! And we had so much fun. We got home and the kids went to bed so nice. They are wonderful children. I wonder what they are thinking. Sylvia (2.5 years) is too young to express anything. I feel like she's distanced herself from Matt a little. When we get ready to leave in the mornings she doesn't always want to give Matt a hug. I think it's just her way of dealing with it. Hailey (she'll be five in October) has said very little as well. I can't get her to talk about it. I'm sure both the kids notice things are different at home. I'd wish Hailey would ask me questions. On Wednesday night, after chemo, I was laying in Hailey's bed, it was late and Hailey hadn't fallen asleep yet either, I was reading stuff about Hodgkin's and treatment etc. I had printed on-line. I kept telling her to close her eyes and try to sleep when I thought she might be interested in what I was reading. She was. I read the list of possible lymphoma symptoms to her and asked her after each one if Daddy had the symptom and she'd look at me with big eyes and say "yes". So, she is aware. And when I got done with the list she said: "Daddy should read this tomorrow, it'll make him feel better." And I thought she must be like me, the more she knows the better she feels about it. Well, I started to explain to her about lymph nodes and about how the doctor took one out of daddy's neck, right where his stitches are, and that they sent it to a lab where another doctor took it and sliced it into very thin slices and looked at it under a microscope. I asked her if she knew what a microscope was and she said: "yes, it's when you look at something and it looks much closer, like the stars." I said: "well, that's a telescope. A microscope makes little things look really big." and I explained to her that they found cancer cells, but that it's ok because some scientist spent a lot of time finding medicine that would make the cancer cells go away. Hailey was hooked! She loved it... her eyes were big with excitement. I finally found a way to conect and talk to her about it. She just wanted to know. When we turned the lights out she said she wanted to go to the doctor with us next time, because she wanted to meet Daddy's new doctor.
Awh... I told her that someday she could go with us and we went to sleep.

Saturday, August 1st, 2009
It was a really windy, hot and humid day. The girls and I went out in the back yard and flew a kite. I filled the wading pool and the girls kept fighting and not listening... I was very frustrated. We only had one kite and both the girls wanted to hold it and they did not want to take turns and I was frustrated. I'm not so proud of how I am dealing with Matt being sick. It's scary and sad and... I know it's awful, but sometimes it's easier to be angry than sad. I don't know why, it's just that way. I don't know what Matt's feeling. He doesn't talk much. The angry-ness passes and Matt's up in the living room taking pictures of me with my whacked out hair - humidity + wind + flying kites + filling the kiddy pool = really frizzy hair even though I had it in a pony tail. We had fun and Matt posted the picture on FaceBook. Thanks Matt!
We actually went to Hercules' for lunch that day and had Ice-cream at around the corner (two days in a row for the girls!). Then went home and Matt crashed and he went to bed again.

Sunday, August 2nd, 2009 through Friday, August 7th, 2009
Matt was doing progressively better. He was doing better than he had been before his treatment. He was itchy on his sides of his torso and got some hives, which went away after a couple of days. The week was fairly event less. He went to work on a few of the days for a few hours at a time, coming home in the afternoon to take naps. It was a good week.

Saturday, August 8th, 2009
It was POURING, yet we decided to leave the kids with Matt's mom and venture up to Pentwater. Just Matt and I. As soon as we got there, the weather cleared up and it was a beautiful day! We had lunch at the Brown Bear Bar and sat on their balcony with a view down the channel onto Lake Michigan. We actually got some Christmas shopping done and had a really fun time. It's nice to go shopping without kids - a guilty pleasure. We got home just in time to put the kids to bed. Matt was feeling very well. He moves a little slower nowadays, but he seems really healthy!

Monday, August 10th, 2009
Jim and Mary, Matt's parents, took Becky, Matt and me out for dinner to the Everyday People Cafe, for our Aniversary. (Thank you Mom for watching the kids again!) It was a nice evening out. Matt seems so healthy. I am happy! Matt is dreading tomorrow - chemo again.

7. Chemo # 1

2009-09-04T21:08:00.000-05:00

Wednesday, July 29th, 2009
I went with Matt for his first chemo treatment. They took his weight, temperature, blood pressure and pulse as we walked into the office. A private room opened up just as we got there. The room is small, has a comfy recliner for Matt and a not so comfy regular chair for me. There's a TV hanging in a corner and an IV bag holder with pump next to the recliner. Mary-Ann comes in to access the port and draws some blood for the CBC (Complete Blood Count) and starts a bag of fluids. Wendy unfortunately does not work on Wednesdays. Matt's Treatments will be schedule for every other Tuesday hereafter. Matt's white blood count was a little low at 2.6 (x10\S\3microL) normal range is 4-11. Yet, it's nothing to worry about.
Soon, Mary-Ann gives Matt the anti-nausea medication through his port, this takes about 1/2hour. Then she pushes 3 of the chemo drugs into the port via a syringe, which takes about 15min. and then starts the last chemo drug which hangs in a bag and is administered with the help of an IV pump (Dacarbazine).

A = Adriamycin, is an anthrcycline antibiotic. It stops the growth of cancer cells, causing cells to die.
More common side effects: decreased white blood cell count with increased risk of infection, decreased platelet count with increased risk of bleeding, loss of appetite, darkening of nail beds and skin creases of hands, Hair loss, Nausea, Vomiting.
Less common side effects: Sores in mouth, radiation recall skin changes (does not apply to Matt), Fetal abnormalities if taken while pregnant or if becoming pregnant while on this drug.
Rare side effects: Temporary changes in EKG, Irregular heartbeat, Heart damage with congestive heart failure
B = Bleomycin, is an antibiotic. Interferes with cell division, which results in the cells being destroyed.
More common side effects: Fever and chills, Nausea, Loss of appetite, Hair loss, Sores in mouth or on lips, skin changes, such as darkened, thckened areas of skin or nails, rash, or dry skin peeling at the fingertips.
Less common side effects: Pain at tumor site, Pait at place of injection, irritation of vein used for giving the drug, irritation of lungs.
Rare side effects: Scarring of lung tissue (if ever need surgery tell anesthesiologist you have had Bleomycin. After receiving this drug it is important no to receive pure oxygen (i.e. during surgery), Anaphylactic reaction with decreased blood pressure, confusion, rapid heart rate, wheezing, and facial swelling.
V = Vinblastine, is a plant (vinca) alkaloids. It stops cell division, resulting in cell death.
More common side effects: Decreased white blood cell count with increased risk of infection, decreased platelet count with increased risk of bleeding, Hair loss.
Less common side effects: Constipation, Numbness and tingling in the hands and/or feet related to peripheral nerve irritation.
Rare side effects: Depression, Headache, jaw pain, difficulty emptying bladder, increased heart rate, dizziness when changing position, changes in vision, nausea, vomiting, sores in mouth or on lips.
D = Dacarbazine, acts like an alkylating agent. It stops the growth of cancer cells, causing cells to die.
More common side effects: Decreased white blood cell count with increased risk of infection, decreased platelet count with increased risk of bleeding, Nausea, Vomiting, Loss of appetite, Irritation of vein used for giving the drug, Flu-like illness up to 7 days after receiving the drug (tiredness, headache, muscle aches, fever, stuffy nose), Hair loss.
Less common side effects: Taste changes, including metallic taste of foods, Hardening of vein used for giving the drug, tiredness (fatigue.
Rare side Effects: Diarrhea, facial flushing, liver toxicity, redness and itching at injection site.

After reading all that... you wonder how bad it's going to be? The doctor said that Matt was going to start feeling better than he had been only a few days after his first treatment. How is that possible when you read how bad the side effects are... not to mention the general idea you have when you hear "chemo".
I am happy to say that Matt did really well after his first treatment. He was REALLY tired. We stopped to pick up some nausea medication on the way home: Prochlorperazine. We got home and we watched TV in the living room and then Matt went to bed. I think he stayed in bed for much of the next 3-4 days, until about Sunday. He didn't come out much, only to eat and drink and put the kids to bed with me, then he'd watch some TV and go back to bed. He wasn't throwing up. He wasn't feeling that nauseous using the Prochlorprazine. Taking it made him non-functional however. He said he'd rather not take them. Matt will ask to try something else next time. Matt was a little itchy on his torso the following week and developed some hives, but it wasn't too bad he says.
Also, his lymphoma symptoms (night sweats, fever and loss of appetite) completely disappeared the following day!!! He really was feeling much better than he had in weeks. It truly is incredible!
Still, it's hard seeing him so exhausted and not being able to participate in everyday activities...

6. Our 1st Appointment with the Oncologist

2009-09-02T20:46:00.000-05:00

Tuesday, July 28th, 2009

Our Appointment with Dr. Gribbin at Cancer & Hematology Centers of Western Michigan was scheduled for 12pm. Dr. VanWylen our surgeon refered us to Dr. Gribbin.
In the last two weeks I had been reading a lot of stuff on-line. Which is good. But one of the things I often read was that this period is a time of big decision making. So, when we were refered to Dr. Gribbins, you wonder: why him? Where should we go? What cancer center is the best? Do we need to go to Ann Arbor?
And then you have others giving you advice and opinions. As the spouce of the patient who is too sick to care that much, you wonder and worry... and feel like YOU are ultimately responsible for making the RIGHT decision.
Well, not that I feel like I have to justify to you (the reader) my decision to go with the flow, but I feel that I will always have to reassure myself that we are doing the right thing, for all the right reasons. I didn't look around much, once Dr. VanWylen made the decision for us.
Dr. Gribbin is local. He works out of the Cancer & Hematology Center right here in Holland. This is important because we have young children and I didn't want our family to be separated for long periods of time. This is hard enough as it is. Also, Dr. Gribbin works at the Lack's Cancer Center at St. Mary's in Grand Rapids, a state of the art Cancer center with all the fancy equipment and all the right resources. We can see him there if we need to. That's also where they have the super fancy PET/CT scan machine. Further, Dr. Gribbin is a graduate of the University of Illinois College of Medicine in Chicago where he completed his internship and residency in Internal Medicine. He completed a fellowship in Hematology/Oncology at the University of Michigan Medical Center in Ann Arbor. He is board certified in Internal Medicine, Medical Oncology and Hematology. Dr. Gribbin is a member of the American Society of Hematology, the American Society of Clinical Oncology, the American Federation for Clinical Research and the American Association for Caner Research. He is currently Medical Director of the St. Mary's Cancer Center. He served as Assistant Professor of Medicine at the University of Michigan Medical Center, Ann Arbor prior to joining Cancer and Hematology Centers of Western Michigan in 1998.
...I think he's qualified... don't you agree?

Mary, Matt's mother, met us outside the office building and we walked in together for our appointment. I was happy she was going with us, because I knew I wouldn't want to have to repeat everything the Dr. told us nor want to try to answer question I hadn't thought of asking. On the way to the examination room the nurse stopped to take Matt's temperature, weight (175lbs, he had lost nearly 20lbs in the last 7 weeks), and height. We were asked to wait in the room for the Nurse Practicioner. It's really an odd room. There is no desk, no counter space, just an exam table pushed up into a corner and 5 black chairs. Two chairs on each wall in an L shape on the opposite corner of the room. One chair waiting for the doctor. You'd expect a group therapy session about to begin. The Nurse Practicioner walked in. A short stout lady, about 10 years older than us with a Jay Lenno haircut. The younger version: black hair with the white stripe (opposed to the look he is sporting now: grey hair with black stripe). She said "Hello", introduced herself and the frst question she asked Matt was if he knew why he was there. Strange. Matt answered, because he has Hodgkin's Lymphoma. She explained that she asks, because she'd had patients come in for their first visit not knowing that they had cancer, and that she'd prefer not to start talking about it as if they knew, when they didn't. Hmm.
So, we gave her a brief history and then Dr. Gribbin came in. I liked him. He reminds me of Anthony Hopkin's and I do not mean as Hannibal Lector. He seems very sophisticated and makes you feel like he's smart enough to take care of the love your life. He listens. He really listens well. When Matt was done talking he explained to us that Matt has stage IVB Hogkin's Lymphoma, Nodular Sclerosing. Stage four, because the PET scan shows that Matt has cancer in Lymphnodes above and below the diaphragm and in the bone of his spine and on a rib bone and in the spleen. He suspects that it is also in his bone marrow. We'll find out after they do a bone marrow biospy. The largest tumor is 3.4 x 1.6 cm in diameter. This is good. The doctor said he would have expected to see something larger, based on how wide spread it is (yeah good news!).
The recommended treatment is ABVD every other week, for 3 months (=3cycles = 6 treatments). Then, Matt will have another PET scan. If it's clean he'll go another 3 months. If it still shows signs of cancer, he'll have chemo for another 3 months and then have another PET scan.

O.k. at this point I'm in a huge fog. Honestly, initially I didn't catch half of the above. I had to ask him about this at a later appointment again. I was still trying to wrap my mind around the fact that Matt has stage 4 cancer. However, the prognosis is like none other. This really is a very treatable cancer even in advanced stages you have a 2/3 (66%) chance of ending up cured in 5 years. Note: when cancer is gone you are in remission after one year, after 5 years you are considered cured!

Matt is going to receive his first chemo treatment tomorrow. Now that's fast for once! Thank goodness!

Mary left after this portion of our appointment. I felt bad that she had to drive home all by herself after hearing the news about Matt having stage 4. Honestly, I am really glad she was there to hear the news from the doctor, because I wouldn't have wanted to have to tell her that myself...

Matt went to another room to have the bone marrow biopsy performed. I chose not to be there. I was there for the lymph node, but the bone marrow biopsy is supposed to be very painful, and I just couldn't take any more of seeing Matt suffer. I do think that he enjoyed the alone time while he was waiting for the Dr. I don't know what he was thinking or feeling. I'm sure he's scared. I am. I got to wait in the family lounge. It was quiet. The room has huge windows and the sky was blue, broken up by white fluffy clouds. My head was spinning. It's the uncertainty of what's going to come next that is the difficult part.

I had to talk to the financial adviser. If you have a deductible or out of pocket you are responsible for, you owe it the day of treatment. "Luckily" we have already met both and everything is "free" for the rest of the year. Thank goodness for good insurance! Each chemo treatment is about $1200.

We met Wendy our nurse. Matt's nurse, but she's sooo nice I'd like to claim her, too. Matt sees the same nurse for each treatment. That's awesome, especially since we love Wendy!

I can't wait for tomorrow. The doctor said that after a few days after the first treatment Matt's fevers and night sweats would go away. That means I should be able to move back into my own bed very soon! Yes, I've been sleeping in Hailey's bed for the last 3-4 weeks now. Hailey sleeps on the crib mattress we put on her bedroom floor. She's enjoying the sleepovers. I miss Matt.

Let's see how Chemo goes tomorrow. Oh, yes they said Matt would start loosing his hair in 2 1/2 weeks. Who cares - it'll grow back. I'm sure Matt cares... but hey, he was loosing it anyway ;0)

5. Matt's first PET scan

2009-09-01T21:48:00.000-05:00

Monday, July 27th, 2009
Matt stuck religiously to the low carbohydrate diet yesterday! It wasn't easy... it's amazing how many carbs you eat in a day. And he did not eat breakfast or drink anything all morning. He was getting dehydrated and was feeling lousy, so I called St. Mary's to verify that he wasn't supposed to drink anything that morning. It really didn't make sense to me... but after what happened on Friday, we were sticking to the instructions. We weren't up to any more delays or unnecessary excitement.
We arrive at the hospital and they take us back to the prep rooms. BTW, Matt's clothes are soaked. He broke a fever in the car and he's sweating through his jeans. The radiology tech offers Matt a diet Pepsi, water, tee anything he'd like (without sugar). We were confused! He CAN drink? The tech told us that it's easier to tell people not to drink or eat anything at all, otherwise, they may drink something they aren't supposed to. Ughhh, nice. Easier when you're not already completely dehydrated from drenching night sweats!
We get back to the prep rooms. WOW! Now that's the place to be. A recliner for Matt and a super comfy chair with FOOT STOOL for me. Our Private room featured a flat screen TV, climate control and dimmable lights. Jackpot of hospital prep rooms. Matt's Port was accessed for the first time. It was still sore and tender to the touch. Think about it, they cut him open and put the plastic disk between the layers of his skin and then stuck a tube into his vein... I'm sure they weren't really gentle about it during the surgery. Surgeons never look gentle on TV. Ha.
Matt also had to drink a glass of barium. His favorite! yuck! That's for the CT scan part of it.
For more info on PET scans: http://www.petscaninfo.com/zportal/portals/pat/cancer
Matt goes for the scan and about 45min. later he opens the door to the room and is taking his shirt off. What??? He says they had a mishap with the port. He says "My shirt is full of blood." I'm confused, they had a mishap and Matt's walking around? Alone? What the heck? He sits down and grabs the clear tubing and closes it. There is air in the tube. The radiology tech (not the one who messed up) comes into the room and calls a nurse. Only nurses are allowed to access the port. Techs are allowed to connect to the tubing that is connected to the port by the nurse. Obviously, the tech didn't even know how to do that, since he disconnected the tubing in a spot where there wasn't a valve to prevent air from getting into the tube. Now, we had a problem: blood clotting. The nurse was nervous that we might loose the Port if he doesn't get the clot resolved... I'm worried about what blood clots could do to Matt.
Oh my, nothing is going easy. Everything is a hassle. Every step is laced with unnecessary excitement. On top of all this the nurse is concerned that Matt had taken the bandage off early and has been showering. Oh my goodness, can they give us anything else to worry about?
The nurse realizes that the tubing outside the port is clogged and that the tube inside Matt is clear. Matt doesn't need a blood thinner and the Port is fine. We get to go home. Finally.
Tomorrow we get to see the Oncologist. Perhaps, with all the "little" things that have been going wrong, the "bigger" things will go well... We are supposed to find out what stage Matt's cancer is.

For staging information go here: http://www.nci.nih.gov/cancertopics/wyntk/hodgkin/page6

The stages of Hodgkin lymphoma are as follows:

Stage I: The lymphoma cells are in one lymph node group (such as in the neck or underarm). Or, if the lymphoma cells are not in the lymph nodes, they are in only one part of a tissue or an organ (such as the lung).
Stage II: The lymphoma cells are in at least two lymph node groups on the same side of (either above or below) the diaphragm. Or, the lymphoma cells are in one part of a tissue or an organ and the lymph nodes near that organ (on the same side of the diaphragm). There may be lymphoma cells in other lymph node groups on the same side of the diaphragm.
Stage III: The lymphoma cells are in lymph nodes above and below the diaphragm. Lymphoma also may be found in one part of a tissue or an organ (such as the liver, lung, or bone) near these lymph node groups. It may also be found in the spleen.
Stage IV: Lymphoma cells are found in several parts of one or more organs or tissues. Or, the lymphoma is in an organ (such as the liver, lung, or bone) and in distant lymph nodes.
Recurrent: The disease returns after treatment.

In addition to these stage numbers, your doctor may also describe the stage as A or B:

A: You have not had weight loss, drenching night sweats, or fevers.
B: You have had weight loss, drenching night sweats, or fevers.

Let's see what tomorrow brings.

4. A nice weekend with the family

2009-09-01T21:07:00.000-05:00

Saturday, July 25th, 2009
Matt is feeling a lot better after receiving fluids last tuesday at the ER and again yesterday when he had the port implanted. Surprisingly, he feels really good considering he had surgery yesterday!
I was going to take the girls and Omi to Aunt Roses/Cousin Jim's Party with my Mom and Roger. Matt decided he wanted to go, too. Shocking! He had spent the whole mornging sleeping and when I was getting into the car - kids were packed and in their seats - he shoo's me out of the driver's seat! Shocking!
Well, Roger and Matt discussed how they were going to get there and Roger leaves our driveway heading East and Matt heads West... what's going on? He was conviced that they were driving through South Haven and he got upset. I called my mom on her cell and she told me they discussed going the Roger was headed. Anyway, Matt wasn't himself. He got so angry. I imagine he feels like crap - physically as well as emotionally.
We had a good time at the Party. Matt took it easy, he actually took a nap in the camping chair in the shade, while the girls, Brandon and Kyle and I went for a wonderful walk around the lake. Those boys are REALLY great kids. We left early and to my surprise Matt drove, again. I think he's tired of being driven and being taken care of... I feel for him.
We get home and Matt takes the bandage (clear celophane wrap) off the incision from his Port implant, before he takes a shower. Those were the instructions he had received for the care of the lymph node incision, and since the nurse who checked us out last night, wasn't sure what we were supposed to do (it was late and she had just joined the party), he decided to do what he was told to do last time. Take the bandage off after 24hrs. It only made sense.

Sunday, July 26th, 2009
After another night of bad sweats, fever, headaches and sleeplessness, Matt felt well enought go to Grandville for a haircut. I took the girls to the Treehouse play area while he got his haircut. Walking through the mall was not an easy task for him, he got exhausted and we went home. All in all it was nice to get out of the house.

3. The story of the Port

2009-09-01T20:52:00.000-05:00

Wednesday, July 22nd, 2009
Matt gets a call that wakes him out of dead sleep. He asks the nurse to wait until he gets a pen and paper and sits down at the dining room table to take notes. The nurse called to give Matt details regarding the Port implant. He should wear loose clothing, that's all. She confirms the appointment is at 3:55pm and we should arrive at 2:30pm at Holland Hospital.

Thursday, July 23rd, 2009
St. Mary's calls to schedule the PET scan. Our appointment is on Monday arrival at 11:00am for injection of radioactive sugar. Scan was scheduled for 12:30pm. Matt should eat low carb diet 24 hrs. prior and no food or drink 6 hrs. prior. Poor Matt.

Friday, July 24th, 2009
Matt is scheduled to have his port implanted. What is a port? We have no clue, so that morning I go online and look up Ports. Hhm... I find a video on you-tube that shows how a port is accessed. Hailey, our little 'scientist' watched the video with me. She was very curious and did not mind watching someone get poked with a needle. I was quite surprised. Here is a link to a youtube video showing how a port is accessed, in case you are curious: http://www.youtube.com/watch?v=AdD3KSGJOHI&feature=related
Here is a link that shows the PowerPort Matt has implanted: http://www.bardaccess.com/port-powerport.php
We drop the kids off at my mom's house and make our way up to Holland and stop at Jimmy John's for a sub and eat lunch at 1pm. When we arrive at the Hospital at 2:30pm the nurse shaves Matt's left chest and starts an IV with fluids. Matt: "Hhmm FLUIDS!" He really likes fluids, nowadays. Then the nurse starts asking the routine questions: "Any allergies?" "No." "When did you eat last?" "At 1 pm." "This afternoon? You're kidding, right?" "No. Why" "Well you weren't supposed to eat six hours prior to surgery."
Ugh... what now?
How is putting the port in any different than taking a whole lymph node out? They did that right in the office with a local anesthesia. Well, it is different. He was sedated so he'd sleep through the procedure. It is truly a minor surgery. Who would have thought? Well, we did not know.
Long story short: Dr. VanWylen is an awesome person and so is his wife. He called his wife to see if he could do Matt's surgery at 7pm (6hrs after Matt ate last). He was able to, and we are so greatful, since the Port is to be used on Monday for the PET scan and on Tuesday we have the appointment with the oncologist. Our FIRST appointment with the oncologist.
The surgery/implant went well, no complications. We had to wait until someone from imaging could come up and take chest x-rays and for a radiologist to review the x-ray to confirm it was implanten and assembled correctly. Then we were released and had to stop at the pharmacy and then got home at 10:30pm. Thank you mom for watching the kids all afternoon, and thank you Mary for putting them to bed and watching them until we got home.

What a long day... but we had an awesome surgeon who took great care of Matt and that made all the difference.

2. Taking Matt to the ER

2009-09-01T20:41:00.000-05:00

Tuesday, July 21st, 2009 (continued)
We leave the house a little after 4pm. My mom has the kids. We've got the Garmin set to lead the way to St. Mary's in Grand Rapids. We get there and Matt is taken to an Emergency Room bed. Dr. Brandt comes to see us and orders an IV to be started with some anti-nausea medication and fluids. They collect blood samples and a urine sample. He's concerned, after we tell him the ordeal that has brought us to this point. He considers keeping Matt over night for observation, but wants to talk to Dr. Gribbin first. Dr. Gribbin is the oncologist who we are scheduled to see next Tuesday. Matt immediately starts feeling better after receiving fluids. He had been completely dehydrated. Although, he had been trying to drink a lot, he couldn't make up for the amount of fluids and electrolytes he'd been loosing every night sweating. Dr. Gribbin told Dr. Brandt that they couldn't do anything for Matt. The symptoms he's experiencing from the Lymphoma won't start getting better until he starts his chemo treatment. Matt is released from the hospital feeling 1000 times better than when we got there. The visit at the ER was so worth it.

1. Matt's coming down with a cold...

2009-08-31T21:50:00.000-05:00

Saturday, June 6th, 2009
Matt's parents leave for a fishing trip to Canada. Matt and his sister are in charge of the farm as he starts feeling like he's getting cold.

Tuesday, June 9th, 2009
He starts running a slight fever in the evenings, and he's really tired.

Friday, June 12th, 2009
Of course my mom taught me the 3 day rule: You call the doctor if a fever lasts for more than 3 days. Matt is also sleeping much of the day. So, I ask Matt to call the doctor's office on Friday the 12th. He gets an appointment with the Nurse Practitioner, who prescribed him antibiotics for a possible sinus infection caused by some virus. Matt doesn't really have much of a stuffy or runny nose. Odd. The swine flu and regular flu virus test came back negative. He is supposed to call back in 3 days if symptoms persist or get worse.

Monday, June 15th, 2009
Matt is still running a low grade fever and is very tired. He slept most of the weekend away. So, he calls the doctor's office back. They have him come in again. They decide to run a Mono test and other blood work. Everything comes back negative or indicative of a virus. What virus, we don't know. They send Matt home telling him to rest and drink lots of fluids and to call back in 3 days if symptoms persist or get worse.

Thursday, June 18th, 2009
Matt is still running a low grade fever. He calls the office and they have him rerun the Mono test, which comes back negative again. They still think it's a virus. They send him home.

Sunday, June 21st, 2009 (Father's day)
The kids and I go to Binder Park Zoo with Grandma Margie and Grandpa Roger. Matt stayed home because he's still really exhausted and doesn't think he'll be able to walk all day. But he starts feeling better towards the end of the day. It was kind of like he's getting over whatever virus he'd been fighting.

Monday, June 22nd, 2009 through Saturday, July 4th, 2009 (Independence day)
Matt was feeling decent. Not 100%, but much, much better than he had been. Matt and I put a retaining wall up against the house creating a wonderful flower bed in the back yard on Saturday June 27th. The fourth of July we spent tearing out the basement window and replacing half of the wall (honestly Matt did ALL the work). The window was replaced with one that is designed to remove both glass panes so we can get drywall sheets in to finish the basement. The wall needed to be replaced, because we had a poorly installed patio door on the floor above, which had been leaking for the last 10 years. This spring we had the patio door installation fixed and now that we're dry it was time to get the moldy wall out, before we slap new insulation and dry wall up... Believe me, I've wondered if the mold was causing the fevers and exhaustion.
Matt was working hard that day and was getting really tired... we got done and went to see the fireworks with our family. Sue and Bill came from Chicago and Bill and Dee and the Kids visited from Niles. Mom, Roger, Crystl, Ryan and Anders also joined us.

Sunday, July 5th, 2009
Matt wasn't getting out of bed. When he finally did, hes said: "Honey, I think I'm sick again." I started getting REALLY worried.

Monday, July 6th, 2009
I had Monday the 5th off and called the doctors office early that morning. I spoke to a triage nurse, who said she'd ask the doctor and call back, after I told her Matt was sick again, same as before: Slight fever and tired. When the nurse called back Matt answered the phone. The nurse said to call back in 3 days if symptoms persist or get worse. I was perturbed.

Tuesday, July 6th, 2009
Matt is still feeling lousy and running low grade fevers. I went to work and called the Doctor's office from there. I got the nerve up to say: "Why are we waiting 3 days? What are we going to do in 3 days that we can't get started on today?" The nurse said she'd talk to the Doctor again and would call me back. Yes, we've got an appointment. I met Matt at the doctor's office. He was going to have more blood work run. The doctor was trying to figure out what Virus.

Wednesday, July 8th, 2009
Called the office from work. All results negative or indicative of Virus, no bacterial infection. However, he was positive for having had the Epstein-Barr virus (EBV) at some point in his life - not now. Epstein-Barr is associated with Mono. Infectious mononucleosis, or "mono", is an infection caused by the Epstein-Barr virus. The virus spreads through saliva, which is why it's sometimes called "kissing disease." Mono occurs most often in 15 to 17-year-olds. However, you can get it at any age. Symptoms of mono include Fever,Sore throat, Swollen lymph glands. Sometimes you may also have a swollen spleen. Serious problems are rare. A blood test can show if you have mono. Most people get better in two to four weeks. However, you may feel tired for a few months afterward. Treatment focuses on helping symptoms and includes medicines for pain and fever, warm salt water gargles and plenty of rest and fluids.
BUT, Matt doesn't have it now. We have the follow-up appointment on Friday July, 10th.

Thursday, July 9th, 2009
Matt was still running low grade fevers and had now started sweating a lot at night. A LOT. We'd started covering the bed with towels, since he'd soak trought the sheets to the mattress. His fevers hadn't been running very high, but reached 102.8 that night. Between 11:10pm and 1:30am I found him talking in his sleep five times. Each time completely unrelated to the previous.
"I just feel like there are so many car seats floating around between us."
"What? The shingles... on the house - you know watcha'ma call'ems.. on the roof"
"I'm not thinking differently"
"Every time it's different... hm, every time it's different."
"Headphones"
...needless to say, at this point I'm scared. Matt has a natural tendency to talk in his sleep, but usually it's no more often than 2-3 times a year. Not 5 times in one night. I had him take his temperature every once in a while and it never exceeded 102.8.

Friday, July 10th, 2009
We went back to the Doctor's office. I had scheduled the appointment for 10:30 am so I could go to work and Matt would have plenty of time to get up and make it to the Dr. office on time. He wasn't moving as fast anymore. He was exhausted. When we got there, we were informed that we'd missed the appointment with the Doctor which had been scheduled for 8:45am. I was pissed. I knew exactly why I chose the later appointment and that I did. Anyway, the Doctor wasn't available because he was on break now. But, we could see the nurse practitioner. I collected myself and replied: "My husband has been sick for five weeks now and you want me to see the nurse practitioner?" (Yes, I wasn't very nice and regret I ever said this. You will see why in just a moment - Amanda, if you ever end up reading this I want you to know I am sorry!). The lady at the reception said she had an afternoon appointment with another Doctor. Anyway, I figured that as long they had the results from the blood work from Tuesday, she could give us those. We were taken to a room and sat there for ever. Matt was not feeling well. I figured we were waiting so long because we'd missed the scheduled appointment and now they are just trying to squeeze us in... That was not the case. Finally, the nurse practitioner Amanda walked in to the room. She apologized for letting us wait so long, but she figured that the last thing we needed today was to see another doctor. So, she had called a meeting and had every doctor and nurse practitioner that had touch Matt's file in the last 5 weeks sit down in one room and discuss what they knew and how to proceed. I felt like crying... finally!!! (At this point I had even tried switching doctors cause I didn't feel like we were getting anywhere, but Matt's dad's Dr. was booked through August for new patients...) Anyway, the doctors decided to collect a stool sample to check for a parasite that is sometimes found in well water, they took a urine sample (it was the color of iced tea), and ordered a TB test, a chest x-ray and blood work for Lyme disease and West Nile. They were stepping it up. They even put a call in to the Center for infectious diseases in Grand Rapids. The doctors were searching for anything that could cause a "chronic fever of unknown origin". I told Amanda about Matt talking in his sleep last night and said: "I know I am being paranoid, but could it be a brain tumor?" Amanda said "no". If he had a tumor in his brain that was large enough to cause a fever, he'd be in a coma. But she reassured me that at this point it's not paranoia it's patient advocacy. She asked if we could think of anything else... Tests later: Matt had Billirubin in his urine, strange because his liver function was good according to blood work. His kidneys: good. Matt was the healthiest sick person!
His chest x-ray was clean. His lungs were fine... and then they ordered the CT scan for that afternoon at Holland Hospital. Amanda told us: "You have the right to know that we are looking for cancer, but it is very unlikely, we are not expecting it." Ugh. That was the first time we heard anyone say the word 'cancer'.
Matt had to drink a BIG jar of barium right after we left the office, had to go home for a stool sample and drink another BIG jar of barium before heading back to Holland to the hospital for the CT scan. I went to work until it was time to meet up with Matt at the Hospital. I felt like I was in a daze... Matt is sooo sick and now they are talking about cancer? Anyway, got to go do this now. It feels good that we have some momentum finally. The CT scan runs uneventful. Except, that while Matt was having the abdomen and pelvis scanned the Hospital was waiting to hear from our insurance company because the Dr.s just called in a chest CT as well. CT's are very expensive so they want to make sure the insurance will cover it. So, the doctors are still thinking about Matt's case, even after we left the office. We do not get results back right away. Amanda calls that evening at home explaining that they found enlarged lymph nodes in his right armpit and an enlarged spleen... again signs of virus or infection. But, now they are going to schedule us with a Surgeon to do a needle biopsy of the lymph node. They are still moving ahead with the Center for infectious diseases, though.

Saturday, July 11th, 2009
Amanda calls telling us they got in touch with the surgeon who doesn't know his schedule, but who wants to see Matt Monday morning. His office will call us on Monday morning to let us know when. This sounds urgent. I start sleeping in Hailey's room because Matt is sweating sooo bad now. He changes the towel, sheet and mattress pads during the night now.

Sunday, July 12th, 2009
Just waiting for Monday.

Monday, July 13th 2009
We get the call from Dr. VanWylen's office and are seen early that morning. Dr. VanWylen now is able to feel and even I can see a lymph node above Matt's collar bone. He moved it around just under his skin. Amanda did not on Friday. That was strange. Dr. VanWylen tells us he'd like to remove a whole lymph node. Right now. Unless, Matt would rather want sedation instead of a local anesthesia. (note here: Matt almost fainted during Sylvia's delivery via C-section...) Dr. VanWylen thinks it could be Lymphoma.
Matt and I decided to do it right away instead of waiting to have it scheduled at the Hospital which would just prolong things. I was so proud of him. I got to sit in the surgery room with him. The lymph node was the size of a large olive and light pink. It was sent to Holland Hospital where it would be prepped and then depending on results sent to Mayo Clinic for second opinion we should know something by Wednesday and get final results from Mayo by Friday we were told. (Everything takes longer than you'd think - beware.)

Tuesday, July 14th, 2009
Nothing new... at this point the Dr.s office is waiting to hear back from the biopsy before proceeding with the Centers for infectious diseases. That's not reassuring.

Wednesday, July 15th, 2009
Nothing new.

Thursday, July 16th, 2009
Nothing... I call both offices neither have any results. Dr. VanWylen calls us in the afternoon. He says he has a preliminary result from the pathologist that it could be Hodgkin Lymphoma - Lymphocyte Predominant... but that it could still change. We are still waiting to hear back from Mayo Clinic. Matt has cancer. Now we're just trying to figure out what kind.... There are two types of Lymphoma: 1. Non-Hodgkin Lymphoma, which has like 30 subtypes ranging from aggressive to not at all aggressive and 2. Hodgkin Lymphoma, which has I believe 4 subtypes, also ranging from more to less aggressive, however all very treatable. 'Very Treatable' what does that mean??? I can't begin to start learning all the different types and what the outcomes might be, so I decide to let it go for now... we'll find out soon enough.
Matt and I take the rest of the day and go see Harry Potter the Half blood prince (it just came out yesterday).
I have a message on my phone as we get back to the car... Addie left a voice mail. She's great - she knew just what to say: "Karin, I know you're going to have times you'll just need to be sad, and times you'll need to get way. I'm here for you." Matt looked at me with tears in his eyes and said: "She can be such a pain in the butt... but she's a REALLY good friend." Then he smiled at me, as I tried not to cry. Reality was starting to sink in.
At night, Matt is still doing really bad, fever, headaches, night sweats, general malaise... I wonder if he's getting depressed. He's been feeling like crap FOR EVER...
For GOOD info on Hodgkin's Lymhoma: http://www.nci.nih.gov/cancertopics/wyntk/hodgkin/page2

Friday, July 17th, 2009
nothing new.

Saturday, July 18th, 2009
I'm worried. Can't sleep. Matt's doing worse. Last week I bought hospital mattress pads. The cotton kind that have pink plastic backing, so Matt likes to lay on a towel so the pad doesn't make him sweat more. But towels are bumpy so he has the sheet he sleeps on over the towel. Matt lays on one half of or bed and rolls onto the other half, half way through the night. Then changes the top layer and sleeps into the mornings. I do laundry everyday and have been washing, sheets and towels, and waterproof mattress pads and pillow cases and pillows every day. Matt seems soooo sick. I call the doctor after hours Saturday afternoon and start crying cause I don't know what to do. They tell me to alternate Tylenol and Aleve it may help with fevers. I'm frustrated. Why can't they do anything to make him better? He seems like he can barely walk. I put the kids to bed and go to Sam's club and buy Gatorade and Ensure. Matt has lost about 17 lbs in the last 6 weeks. He looks so pale and skinny. My mom has been great helping out with the kids and giving me space. She knows I can get funny when I'm emotional. Matt's parents have been wonderful. Jim called this morning and talked to me for half an hour this morning... about Benny and how he needs to show him how to do stuff while they're hosting the conference next week. It was nice. I know he's worried and it felt nice that he called and talked to me. We are all hanging in limbo. Mary has to be worried sick. I can't imagine if it were my child. Not that Matt being my husband makes it any better/easier... but your child is your child. It has to be difficult.

Sunday, July 19th, 2009
Bryon and Nicole come over with the kids. Matt is feeling slightly better. I think Gatorade and Ensure is helping him get hydrated and some energy and nutrients. Matt has lost his appetite. I can't get over how sick he feels. I think it was good that Matt was able to spend some time with Bryon. Matt doesn't talk much when he's feeling lousy. So, I'm not sure what he's thinking and I can't begin to imagine. I feel like crap emotionally and I'm not even the one with cancer - who knows what kind of cancer - not that it really matters when you're trying to wrap your mind around the fact that you or your loved one has cancer.

Monday, July 20th, 2009
Have I mentioned how awesome my boss has been? Well, all I can say is a million thanks!
No news. No news. I called both the Doctors office and the Surgeons office. No news! Matt is sooo sick and we're doing nothing.

Tuesday, July 21st, 2009
I am upset. I can't get any answers. We know it's cancer, why haven't we scheduled an appointment with an oncologist??? What are we waiting for? Matt looks deathly ill. A colleague at work has me looking at cancer centers in the area. He has experience with this. So, I find a phone number for a social worker at Lacks Cancer Center at St. Mary's Hospital in Grand Rapids. I call and leave a message. I really didn't know what I was expecting. I just wanted someone to tell me how long this should be taking. Why no one is taking care of Matt? What should I be expecting? Should I be switching to Doctors in Ann Arbor???? Damn.
A couple hours later I have a social worker returning my call. She said I had called the financial advisor and that he gave her my number. Wow. She asked me what was wrong. I told her about Matt and how he seems so ill and I'm not getting answers and no one is doing anything. He's not doing well. She told me to take him to the ER at St. Mary's. They can check him out. If he's okay they can send him home. If he's not, they can take care of him... I liked her. She said, I know my husband best and that I should listen to my gut feeling. I left work 20 minutes later. Matt was willing to go to the ER. That was unexpected. He must be feeling really bad if he's willing to go! On my way home the Surgeon calls. I pull over and park the car. He has news. It's Hodgkins Lymphoma - Nodular Sclerosing (different than initial diagnosis, still very treatable). His office will call me back with our next appointments. I told him about my conversation with the social worker and what she said. He told me that if Matt's still eating and drinking not to worry and he would not take him to the ER they couldn't do anything. Now I was confused. Should I take him or not? Who do I call? I try calling Mary but she's hosting the conference and she's not picking up. I call Bryon, he has experience with cancer... He tells me to take him in. He thinks as weak as Matt is now he needs to get his strength back before he starts chemo. Okay, I get home and Mary and Becky are at the house sitting with Matt. Good! They agree, I should take him. He wants to go, but is hesitant. I get a call from the Surgeons office with an appointment for NEXT Tuesday July 28th!!! Are you kidding me? Another week? I'm definitely taking him now!

Oh, and we are scheduled for Matt to get a Port on Friday the 24th... whatever that is.