Sunday, August 31, 2008

Good Bye Cisplatin!

It's early Sunday morning or late Saturday night, whatever your pleasure. Kevin's now done with Cisplatin, which is by far the most symptom/side effect inducing drug on his protocol. The next few days won't be easy, but I'm thrilled he is done with this, the only high dose chemo he receives. Kevin will receive Cyclophosphamide the next 2 days, which from what I understand is a mustard gas derivative as opposed to a platinum based chemo like cisplatin. It comes with it's own side effects, but in general is much easier on his body. I was with him in the morning when the cisplatin was administered, and as usual he became very ill. They gave him the trifecta anti-nausea cocktail, which makes him pretty incoherant. As Rachel wrote, he seemed to be pretty sick when she was with him this afternoon. However, this evening he actually has done very well. He was pretty out of it when I first arrived tonight, but the drugs started to wear off, and he became much more lucid. We finished a movie that him and Mike started then read for about 45 minutes. He ate a Star Crunch (one of the few things he'll eat at pretty much any time) and even did his mouth care without a battle. It sounds like he had a pretty acute reaction to his chemo in the afternoon, but tonight he hasn't needed any additional nausea meds and hasn't complained of feeling ill. Overall he rebounded pretty well from his rough afternoon. You can totally tell when the drugs wear off, because his speach and awareness is night and day. When this is all said and done, Kevin will have spent more then 50 nights in the hospital since his tumor was diagnosed (including surgeries, inpatient chemo, and infection). At 8 years old that probably is more then most people will spend hospitalized their entire life. I think Kevin, like I is more or less numb to it by now. It is what it is, and you do what you need to do to get through it. I'm thinking he'll probably be inpatient (which means I'll remain here) until Friday. After that he'll be here anywhere from 3 to 5 weeks. .

Hopefully everybody back home survived both U of M and M.S.U losing close games this Saturday. LOL I was thrilled to find the game (U of M of course) was actually on ESPN out here. I don't like when my team loses, but I guess I have more perspective then ever now on what's important.

Take Care,

Eric

Rough, rough day

Kevin threw up a lot today. He had to pee alot too (every 45 minutes). We had a few acciendents because he was pretty drugged up and very loopy. His short term memory was shot but he was pretty patient when I didn't understand what he was saying. It is really difficult to see him so sick. Tomorrow is probably another rough day as it is the same chemo again.


Here are some pictures from this past week before going back in for chemo:






Rachel

Saturday, August 30, 2008

Last round of chemo - prayers please

Kevin is officially inpatient right now for his last round of chemo. He started fluids tonight and tomorrow they will start the chemo bright and early. Kevin appears to be already showing some nerve damage in his thumbs. He tries to minimize it. Please pray that his hearing, bladder, kidneys, heart are protected through this last round of chemo. Even though it may sounds vain, please pray his hair comes back sooner than later and just as full as before all of this. Kevin mentioned a couple of weeks ago he missed his hair. He has been such a tropper through all of this. His strength amazes me. Please pray that we get all of the cancer so it never comes back.

Thank you!
Rachel

Thursday, August 28, 2008

“Comedians for a Cause” Benefit for the Kevin Saarela Cancer Fund

Kevin’s Friends and Family have organized this event to help the Herr-Saarela family focus on winning this battle with childhood cancer.

Join us for “Comedians for a Cause”
on Thursday, September 25, 2008,
At Joey’s Comedy Club
Seating at 7:30pm, Show at 8 pm
36071 Plymouth Road, Livonia, MI
734-261-0555
$15 per ticket/person ($10 goes to Kevin's Cancer Fund)
Tickets must be purchased in advanced by September 20th
21 years of age and older please
For tickets please mail checks payable to ‘The Kevin Saarela Cancer Fund’ to Julie Zube 1201 Penarth St., Commerce Twp., MI 48382
IMPORTANT: Please include name & address (and contact phone number& email ) and how many tickets requested along with your check.


Call ahead for 25% off dinner at Kickers Restaurant or 50% pizza during the show.


For more information contact Julie Zube at 248-366-9691 or email kevinsaarelacancerbenefit@yahoo.com


Thank you for your support!

P.S. Kevin's Cancer Fund is regulated by the IRS and funds can only be used for Kevin's medical care, travel for him and immediate family members only to and from the medical facility and for living expenses near medical facility more than 50 miles from home.

Tuesday, August 26, 2008

Ready for 4rth and final round

We had our B-Clinic visit today. Kevin's counts look good and he's ready to move forward with his final round of chemo this Friday. Also, it appears the anti-fungal medicine is working with his lesions. One lesion is 1/2 the size while the other remains unchanged for now. It sounds like he'll be on the medication for some time, possibly incuding when he's home. All in all this was good news, as if these were not fungus related legions there would not have been change from the first CT scan to the next. It's something they will stay on top of, and unfortunately that includes yet another CT scan. We don't necessarily like the idea of repeated scans to his stomach, but it needs to be done to check progress. On another note, Kevin totally threw me under the bus with the Physician's Assistant (kind of like a Doctor without the MD). As he gave us the news Kevin started raising his hand, to say something. He had the sly smile on his face that often means trouble. He informed Richard that "Daddy said the CT Technician gave us better information then the Physician's assistant (regarding the nature of fungus caused lesions". I could have died. Kevin was laughing as he said this, but both Richard and I had an awkward pause. Then I tried to dig myself out, and it so didn't work. Rachel of course had a little grin on her face as this episode played out. I of course kissed some major behind the remaining 5 minutes of our visit, and thanked him vigorously. Truth be told B clinic has been great, but the delivery of information sometimes is a little more succint coming from a Technician then the clinic. Kevin got a kick out of watching dad's look of horror on my face. I felt like I just got caught taking a nap at work by my boss, or worse yet by Judy--lol. Anyway, Kevin's feeling quite well. Although, on the way into the B-clinic he bumped his head really hard on the heavy solid wood doors. The doors push open, and they were all the way open, and he slammed it hard (for no apparent reason other then he had energy) against the wall, which then caused the door to rebound and smack him right on the forehead. Poor little guy starting screaming and crying. The nurses were very sweet and got him an ice bag really quick. Richard checked him out thoroughly, and determined he was ok. Thankfully this was on his forehead and not in the back of his head (surgical incision) or on top of his head (shunt). Like I said though, a few minutes later Kevin felt good enough to sell dad out. Rachel commented that it sounds like something I probably would have said when I was a kid.....I think she's probably right. All in all Kevin's well. He's been eating as much as I've seen in quite some time. Of course this will all reverse starting Saturday morning when he gets his final dose of Cisplatin the high dose chemo on day -4. I hope all is well back home.

Take Care,

Eric

Sunday, August 24, 2008

Lazy Sunday

It's nearly 7:30 p.m. and Kevin and I have not left the Target House. It is not because Kevin's not feeling well. On the contrary, Kevin has felt great today. His appetite has been very, very good the last couple of days....and not I'm sure it's no coincidence that his energy is u as well. Nope, today was simply a lazy day for both of us. And we enjoyed every minute of it, including waking up at 10 a.m. His spirits have been up as well. The other day he received a card from his friend Kyle back home, which really made his day. On days like today in paticular, he really misses his friends back home. When he's feeling well, I think he imagines the reality of playing with them.

Tomorrow is the follow up CT Scan to see if the fungal medicine changed the lesions on his spleen. I'm not sure if we get results or not the same day. As I mentioned before it's not the doctors belief that it's a malignancy. He does have a shunt which drains into his stomach, but his CNS fluid has tested clean as recently as last month. Plus the fact he has no symtoms of any kind. Another possibility is that they were there before all of this. We'll find out more soon, hopefully.

I hope everybody's had a great weekend

Saturday, August 23, 2008

Kevin's Cancer FAQs - Medulloblastoma

Hopefully this will help answer some of the questions we get. Please feel free to email us any other questions you might have. We are learning lots as we go. I will try to share what I can. - Rachel


What is cancer?
Cancer is a group of diseases in which cells are aggressive (grow and divide without respect to normal limits), invasive (invade and destroy adjacent tissues), and sometimes metastatic (spread to other locations in the body). These three malignant properties of cancers differentiate them from benign tumors, which are self-limited in their growth and don't invade or metastasize (although some benign tumor types are capable of becoming malignant). Cancer may affect people at all ages, even fetuses, but risk for the more common varieties tends to increase with age. Cancer causes about 13% of all deaths. According to the American Cancer Society, 7.6 million people died from cancer in the world during 2007. http://en.wikipedia.org/wiki/Cancer


How did Kevin get cancer?

We don't really know. From our understanding there is no cancer gene running in either side of Kevin's family, but Kevin did test positive for the mutated gene which caused cancer. How it mutated we have yet to figure out. I highly recommend the Nova program I placed a link to in the previous post.


What kind of cancer does Kevin have?
He has malignant brain cancer that was removed with surgery in Feb. 2008. Medulloblastoma is a highly malignant primary brain tumor that originates in the cerebellum or posterior fossa. Medulloblastoma is one of the most common primitive neuroectodermal tumors (PNET) originating in the brain. All PNET tumors of the brain are invasive and rapidly growing tumors that, unlike most brain tumors, this one can spread through the cerebrospinal fluid (CSF) and frequently metastasize to different locations in the brain and spine. Brain tumors are the second most common malignancy among children less than 20 years of
age. Medulloblastoma is the most common malignant brain tumor, comprising 14.5% of newly diagnosed cases. http://en.wikipedia.org/wiki/Medulloblastoma


What happened to his hair?

Kevin's hair first fell out in April, after weeks of craniospinal radiation with a couple of week of 'tumor boost' where they targeted a higher dosage where the tumor used to be at the back of his head. Before starting chemotherapy in May, Kevin's hair actually came back a little. Since high dose chemotherapy and stem cell transplants Kevin's hair on his head, eye brows and eye lashes have almost all fallen out . Doctors have told me that his hair may never came back fully as a result of the high doses of radiation and the cumulative chemotherapy. It is likely that some of the hair follicles on his head are permanently dead, but it could come back years from now. There is just no way to know.


What is chemotherapy?
Chemotherapy, or "chemical treatment," has been around since the days of the ancient Greeks. However, chemotherapy for the treatment of cancer began in the 1940s with the use of nitrogen mustard (mustard gases used in chemical warfare). Since then, in the attempt to discover what is effective in chemotherapy, many new drugs have been developed and tried. Sometimes referred to simply as "chemo", chemotherapy is used most often to describe drugs that kill cancer cells directly. These are sometimes referred to as "anti-cancer" drugs or "antineoplastics." Today's therapy uses more than 100 drugs to treat cancer. There are even more chemo drugs still under development and investigation. http://www.chemocare.com/whatis/what_is_chemotherapy.asp Chemotherapy is a general term used to describe dozens of different medications that all work to kill cancer cells. The reason chemotherapy is a difficult process to go through is because it kills all cells, not just cancer cells. This causes many side effects such as compromised blood counts which can lead to a compromised immune system, infection, fatigue and bleeding.


What is radiation therapy?

Radiation therapy (or radiotherapy) is the medical use of ionizing radiation as part of cancer treatment to control malignant cells (not to be confused with radiology, the use of radiation in medical imaging and diagnosis). Radiotherapy may be used for curative or adjuvant cancer treatment. It is used as palliative treatment (where cure is not possible and the aim is for local disease control or symptomatic relief) or as therapeutic treatment (where the therapy has survival benefit and it can be curative). http://en.wikipedia.org/wiki/Radiation_therapy

Kevin received radiation to his head and and spine in 33 treatments in a little over 6 weeks.


What is remission?

Remission is every cancer survivor's favorite word. It is hard to get most oncologists to say, but with coaxing and lots of treatment it is possible. I have heard it a couple times. Remission is the state of absence of disease activity in patients with known chronic illness. It is commonly used to refer to absence of active cancer. http://en.wikipedia.org/wiki/Remission Remission can be reached multiple times. Each type of cancer has different markers and milestones that indicate true remission and long term survival.


Is there a cure for cancer?
Some types of cancer have cures. Most do not. There is no "cure" for the kind of cancer Kevin has, but we have personally met many people who are long term cancer survivors. Rapid advances in cancer research and treatment are very promising. All we can do is keep on fighting until there is a cure. Cancer is a chronic illness, something you live with and treat.

What are late effects of cancer?

(taken from http://books.nap.edu/openbook.php?record_id=10767&page=50) 'Childhood cancer survivors, though being “cured” of cancer, often experience late effects, both physical and psychological, secondary to their cancer or its treatment. Complications, disabilities, or adverse outcomes that are the result of the disease process, the treatment, or both, are generally referred to as “late effects.” Late effects may be easy to identify because of their visibility (e.g., amputation) or direct effects on function (e.g., severe cognitive impairment). Other late effects, however, can be subtle and apparent only to the trained observer (e.g., scoliosis or curvature of the spine) or not directly observable and identified only through screening or imaging tests (hypothyroidism, infertility). In addition to concerns about a recurrence of the cancer for which they were treated, cancer survivors are also at increased risk of developing a second type of cancer because of either their treatment for cancer (e.g., radiation), their genetic or other susceptibility, or some interaction between treatment and genetic susceptibility.

Some late effects of therapy are identified early in follow-up—during the childhood or adolescent years—and resolve without consequence. Others may persist, become chronic problems, and influence the progression of other diseases associated with aging. For example, renal dysfunction secondary to treatment with the chemotherapeutic agent ifosfamide may be accelerated if the survivor develops hypertension or diabetes mellitus, two common adult health problems (Prasad et al., 1996; Skinner et al., 2000).

Chemotherapy, radiation therapy, and surgery may all cause late effects involving any organ or system of the body.' To read more click here

Brain cancer late effects
• Neurologic and cognitive effects (e.g., learning disabilities)
• Abnormal growth and maturation
• Hearing loss
• Kidney damage
• Hepatitis C
• Infertility
• Vision problems
• Second cancers


Are childhood cancer rates on the rise or do we have better detection?
The answer to this question is different, depending on who you ask. According to Chemical Industry, an environmental watchdog cancer rates for children are increasing. According to their website:

'Fact #4: Cancer rates are up, particularly for cancers that affect the young

Cancer incidence increased steadily between 1973 and 1996, and probably for longer than that, although the government did not keep track of cancer rates before 1973. The increase was consistent across many types of cancer, from breast cancer, that increased steadily at 1.5 percent per year, to prostate cancer, that skyrocketed at 4.4 percent per year. Overall, cancer incidence in the U.S. rose by 1.1 percent per year during that time, or about 11,000 more cancers per million people each year. For some cancers the increase appears to have leveled off, but for many other cancers, rates continue to rise (NCI 1996, NCI 1997).

Isn't this just because people are living longer?
No. All of the rates represent the increase after accounting for an aging population.

Isn't the increase just the result of better detection?
For some portion of some cancers better detection explains the increase, but better detection does not account for the overall dramatic increases in cancer incidence that have occurred in the past 30 years (Ekbom 1998, NCI 1996, NCI 1997).

Childhood cancers on the rise
In the 20 years from 1975 to 1995, childhood cancer rates rose 20 percent, from 128 cases per million children in 1975 to 154 cases per million in 1995. Between 1992 and 1996, 20 of every 100,000 preschool-age children (four and younger) were diagnosed with cancer, or 200 times the one in a million lifetime risk level at which the federal government attempts to set regulations controlling chemical exposures. (NCI 1996)

Childhood leukemia: Leukemia, the most common childhood cancer, increased by about 17% between 1973 and 1996 (from 23 to 27 cases per million children) (EPA 2000).

Childhood brain cancer: The incidence of brain and other central nervous system tumors in children rose by 26% between 1973 and 1996 (EPA 2000).' - http://www.chemicalindustryarchives.org/factfiction/facts/4.asp


Disclaimer: We are not scientists, nor doctors but we are concerned parents who have a child who life has changed dramatically because of this disease. Our information is complied from reading lots of books, talking to doctors, other parents in similar situations and trying to read anything we can. This are the answers we have found right now.

How Cancer Grows - from Nova program 2001

How Cancer Grows
Follow the growth of a carcinoma from initial mutation to widespread metastasis. Flash plugin required.


All cancers begin with a genetic mutation within a body cell and advance when the cell's descendants mutate further. This feature follows the progression of a malignant tumor, beginning with the first mutation within a cell and ending with metastasis, the colonization of related tumors throughout the body. It focuses on the most common type of cancer, a carcinoma, which can originate in a particular type of tissue found in the skin, breast, prostate, and other organs.

Watch the Nova program:

This hour-long program is divided into eight chapters. Choose any chapter and select QuickTime or Real Video to begin viewing.

Friday, August 22, 2008

quick update

Kevin starts chemo on Friday now. They're giving him another CT scan to check his spean on Monday. The ultrasound was fine. Basically, they aren't 100% sure what the cause of the lesions are, but they've pretty much ruled out anything serious. However, one strong possibility could be a fungus infection that caused the lesions. They've given him a fungus medication that he's been taking, and the second CT scan should give them a better idea of what's going on. If the lesions got smaller then a fungus was probably the cause. To be honest I kind of understand, but don't not concretely. I certainly asked if they thought it was anything to do with a malignancy, and he said no. If they had a concern they would go in and do a biopsy, which would be the only definitive way to show. A lesion can be a million things, but of course a headache can be a million things too, and my son was the one who ended up with a brain tumor. He feels good, and his appetite is very solid. Today he had a couple chicken nuggets, a bowl of cereal, some ice cream, some microwave buttered popcorn, and a Star Crunch. It seems he eats pretty well when we make it "movie night". Tonights feature in room 313 was Doolittle 3, which was ok...He seemed to like it a lot. He just fell asleep watching the Olympics with me. We have no appointments this weekend, because his counts are so good. Everything is up and he's feeling well. They would start chemo sooner, but it was just a scheduling thing with the BMT unit. Mike came in today, and tomorrow I'll drop Kevin off at the apt. as I do my fantasy football draft. Hope all is well back home. Kevin's feeling very well. Monday's CT scan should give us a better idea about the splean lesions, but overall it doesn't seem to be a large concern.

Take Care,

Eric

Friday morning

Well it's Friday morning and Kevin's watching cartoons. We're both waiting for his morning ritual of medireds to complete their morning cycle. I've been administering his anti-nausea medicine about 30 or 45 minutes before he wakes up, which seems to have been working pretty well. Yesterday Kevin and met everybody at the Peabody, although we just missed the ducks. Silly dad thought it was at the Peabody plaza were Jillians is and all the other stores. We caught the end where everbody was gathered around the ducks already in the fountain. We did miss the marching of the ducks down to the fountain. Afterward we went to Jillians, the game place we've been to several times before. I made a deal with Kevin that if he ate, I'd get him a $10 game card. Kevin ate very well, finishing 3 cheese sticks. We had a lot of fun playing games together, and they gave him a free baseball hat as well. We went back to Rachel's appt and took a nap before they got back from their sight seeing tour. Finally we went back to the Target House where Kevin asked what there was to eat!!! This was such a welcomed thing to hear. He ended up having some beefaroni, of which he ate 90%. He had a great night. We watched the olympics together and he really seemed to enjoy it. As we watched Track & Field I explained to him how daddy ran track for many years. Of course he asked why I'm not a the Olympics with everbody on t.v. We also watched the mens Beach Volleyball finals. He really enjoyed this as well, commenting several times how tall the American players are (the front row blocker is 6 ft 7). We're off to our Friday appts soon. His first appointment is at 9:45. I'm anxious to hear when his final round of chemo starts, and of course the results of his ultrasound on his splean. Overall he's feeling quite well. He's not the slightest bit nauseated this morning.

Eric

1st Day off Since MAY!!!

We finally got a weekday off from hospital appointments (or being inpatient) since May! So we made the best of the Carole, Lynn, Gavin & Kellen's last hours here and went sight seeing! Here are some of the pictures:


videoThe ducks going down the red carpet at the Peabody Hotel in downtown.

video

Thank you so much to Carole and Lynn for all of their help! It was nice too get a little 'girl' time with my friends. I miss being home with my family & friends so much. I has really hit home how long Kevin, Jake & I have been away. I am glad Kellen came and gave Kevin some time with a friend from home, I am just a little sad that it got cut short and Kevin was put in a situation where he felt he had to choose. Kevin needs time with familiar kids his age too and their trip here made that really apparent. I feel bad Kevin is surrounded by adults so much and having to find his way through a very adult situation. I try to plan playdates with a few kids we have met here in Memphis, but it typically only happens about once a month and this past month was really rough. We will find out tomorrow how much longer chemo is going to be delayed. It looks like it will probably be closer to October before we go home than I would like, but I don't want Kevin starting this last round of chemo not as recovered as he should be.


Please pray for Heather a little girl here who had the same type of tumor as Kev, she is having issues with throwing up lots. She maybe able to go home next week if she is able to kick this barfing stuff. She has had a really rough go of it the whole time.

Rachel

Wednesday, August 20, 2008

Nice day

It's nice to be back in Memphis. Kevin's actually feeling quite good. We had 2 quick apts at 9:30 and 10 and that was it as far as the hospital went. A large group of us, Rachel, Lynn, her two boys, Carol, Kevin, Scotty, Jake and I went to the Pink Palace. We saw Deep Sea Monsters at the Pink Palace, which all the boys really seemed to enjoy. Kevin seemed pretty connected and sharp, which was great to see. At night we ate dinner and I had the chance to meet Cathy and Steven, the person Rachel wrote about a couple of days ago. It was very nice to meet her and Steven. He got a clean bill on his MRI's after 5 years, which is a huge milestone in cancer. He's an inspiration for Kevin. His mother was very informative, and just a great source of information. Having read her blog, and knowing her influence in Kevin ending up at St. Jude, it was great to have met them. Thursday is a full day off! We're going to the Peabody to watch the ducks make there daily journey to the fountain. Friday will be our big B clinic day, which we find out what the ultrasound revealed on his stomach, and when his last round of chemo begins. It's great to be back with Kevin, and even better to see him with some pep in his step.

Take Care,

Eric

Tuesday, August 19, 2008

clarificaton

I've heard from a couple people that Rachel's blog indicated lesions on the spine. She just didn't spell spleen correctly. Just a small spelling error, but she meant spleen not spine. Spine would be bad, spleen is more then likely a side effect from chemo, but we'll learn more soon. I'm flying down a.s.a.p. as all I do is think about Kevin right now. Will post more once I'm down there and learn more. The spleen issue is something that needs to be addressed, but brain cancer when it spreads travels through the brain and up and down the spine. It would not travel to his spleen. Lesions are often marks or scarring, which can be caused by chemo.

Eric

Monday, August 18, 2008

LONG Week

It feels like it should be Friday, not Monday. I really worked hard to get Kevin out of the hospital today, and did! There was talk of him staying a couple more days but he really is doing well. Yes, we are all worried about the lesions on his spline. He is going in for an ultrasound tomorrow and we have to keep an eye on his CBG levels (hopefully I have it right, it is suppose to be the level that shows that the body is trying to fight an infection, typically after breaking a bone or after surgery or a stroke or heart attack).

So Eric is right, Kevin is really weak and this is getting really scary, but I know that without this the likelyhood of kevin's cancer coming back within the next 5 years is greater.

Some good things have happened in the last 24 hours. We got to met Kathy and her son Steven Sunday night! They stopped into Kevin's room after checking it at the hospital for Steven's 5 year post treatment follow up visit. It was so good to finally meet mine and Kevin's angel! She is the one who found us (online via this blog) when Kevin was first disagnosised back in Detroit. Mike had posted Kevin's diagnosis here and it showed up on one of her google alerts (thank heaven!). She contacted us and held my hand (so to speak) through the whole choosing a treatment and helping us get Kevin into St. Jude for treatment once I figured out this was really the best place for him (and it is!) She was there for late night phone calls when I didn't understand something the doctors had done or told us earlier while at the hospital. She is was a sympathic and understand ear who had walked down this road before me and was kind enough to walk a complete stranger down this scarey road to help them. Kathy is an amazing woman and mother. I really appreciate her friendship and understanding she so willingly gives. I can't say enough how much I really admire her and how grateful I am to her. She may have saved Kevin's life by helping us get Kevin into a more sucessful protocol (treatment for his cancer).

Another good thing is my close friends Carole and Lynn are here. Lynn brought Kevin and Scotty's friends (Kellen and Gavin, her son's) with them. Kevin was so happy to get out of the hospital and play with Kellen like old times. They played and when Kevin started to get tired, Kellen sat right next to Kevin while they watched Star Wars the Clone Wars. Kellen helped me while I hooked up Kevin's medicine. Such a brave thing to see your friend go through and stay right next to him! When we first met up with them Kevin was afraid Kellen wouldn't want to play with him anymore because he was ,"the sick kid" (his own words, expressing his concern). I reassured him that wasn't true and sure enough, they were stuck together within minutes and it was nice to see Kevin acting like a kid and with someone he has known for a long time, someone who is comforting to him other than all of the adults he is always surrounded by.

Kevin is pretty emotional right now. There is alot going on as we prepare to finish treatment and return home in October (we hope! If everything goes well this last round). I feel WAYYY behind on everything, thank yous, birthday cards, emails, phone calls, etc. Last month I had such a good grip on things and this month I feel like I have just lost it and I can't catch up.

Scotty is enjoying have Gavin here. We don't have them spending the night in the same place, we all discussed this and decided that it was better to seperate them so we can get some decent sleep. And I am enjoying having my friends here too. It was nice to sit down to dinner with them while the kids watched their movie and just talk like old times, when Michigan, not Memphis, TN was mine and the boys home.

Jake update.
Jake is SO BUSY! I caught him climbing the walls in his play pen we have msde at Target House. He had almost climbed over!!! He so wanted to go play with the older kids. Jake is still a big flirt and tilts his head when people come up and give him lots of attention. He also has this new HUGE smile that he suck all of the air in from his lungs and makes this really excited sound. He is working on learning how to use a spoon. He eats more than any of the other two boys combined and he doens't eat any dairy or nut or chocolate products! We are pretty sure he said 'guys' today when calling after the older kids today. So that brings his words to 'this', 'that', 'da' (dad), 'guys' and there is some debate about him trying to say Scotty. I haven't personally heard it yet though (so does it count?). One more month and Jake turns one!

I should get to sleep. I have to be up at 4 am to do Kevin's meds.

Rachel

Out for a bit

Kevin left the hospital this afternoon after 2 nights there. He had some inflamation in his stomach, and to be honest we're not sure exactly what happend. He had uncontrollable pain in his stomach for one night accompanied by a fever. He's been given antibiotics and both have been long gone since the night he was admitted. They may or may not delay his chemo a couple of days. It's a decision they'll make in the B clinic. Thank God this is the last round of chemo. His body is breaking down more. He's become fragile in every sense. All in all he seemed to rebound pretty well from the first two rounds, but this 3rd round has really taken it's toll. I guess so long as the chemo is keeping the cancer away it's a necessary evil, just so they put him back together again (so to speak). He's doing ok now, but I know his insides are taking on some damage. He's an amazing child, and Rachel and I are proud of him. I can't wait to get back down to Memphis to be with him. This time around it will probably be 8 to 10 days. Kevin will fight through this last round, and pull the rest of us along with him.

Eric

Saturday, August 16, 2008

feeling better

I just spoke with Rachel, and it seems he's a lot better then yesterday. It appears the serious problems have been ruled out one by one. It appears to be some sort of fungus or virus that's causing some inflamation in his stomach. He's playing games today, and doesn't appear to be struggling with pain, and no longer has a fever. Mike's down there right now, so unless he remains hospitalized Sunday night I'll hold off until his chemo starts to go down there. As long as he remains fever free, and his pain continues to subside he should get out tomorrow, although that's not official. So I'm able to take exhale finally after a turbulant several hours of test and waiting. I'm not sure yet if this will delay his chemo or not, but if it does it shouldn't be by much. He's playing monopoly with Mike right now, which is always a good sign. He doesn't have any interest in playing games when he's not feeling well. We will know more tomorrow morning, but thus far signs are showing this setback isn't serious. I'm off to an 8 mile run to "relax" after worrying all day.

Take Care,

Eric

Stomach problem

Kevin began to have some sever stomach pain last night. Rachel texted me 4 a.m. and I didn't find out until I woke up. He's been admitted for the time being, and they're doing some test. The pain was significant enough that it warranted Morphine last night (middle of the night). I guess he hasn't needed anything today. The surgeon ruled out appendacitis, which is good. They're looking into the possibility of infection now. I'm still trying to get more information, but haven't been able to gt ahold of Rachel the last hour or two. I will update as I learn more. At this point, I'm not sure if I'm flying down or not, as they haven't determined if they're keeping him another night inpatient.

Eric

Thursday, August 14, 2008

Donating the gifts


We had a long day yesterday. Starting at the hospital at 9 am by 3 pm Kevin was pretty tired. We loaded up one and half wagons with the presents for the St. Jude treasure boxes. Kevin got a little frustrated with the wagon he was pulling and his lack of energy showed when there were some tears, but we stopped and rested and in typical Kevin fashion he was able to muster more strength to carry on. They have never had a child donate their birthday presents before so the social worker wasn't sure how to handle the situation at first, but she lead him from each clinic pulling out each treasure box and letting him fill it up. Toward the end Kevin asked Scotty to help him load up the treasure boxes, fill the Friday toy wagon in radiation (Kevin's favorite when he was in radiation months ago). In the MRI clinic Kevin and Scotty filled the cabinet up and their was a 9 year old little boy who was actually in the MRI during our fill up who was going to get to choose from the cabinet they just stocked. The cabinet was pretty picked over when we first arrived and lots of good things went up on those shelves. In assestment triage, where all of the kids get their blood work, labs and weight checked, some of the nurses came out to clap for Kevin as he and Scotty filled the treasure box. It was aparent that this treasure box gets used often as it was almost empty. It was full when Kevin and Scotty where done.

I am really proud of both Kevin and Scotty kindness. Scotty gave away one of his new prized game pieces to a little boy at the hospital who was having a really rough time in B clinic waiting area and he is giving his gameboy to the same little boy next week after Mike brings it today from Michigan. I am really proud of Kevin and how kindly gave away toys he would have gladly played with being able to find joy in making others happy.

Here are some more pictures:









Our first stop B clinic


Filling the treasure box in A clinic

3 bags emptied, only 3 full big ones to go!



Assessment Triage treasure box almost full!














The halls of radiation clinic with our favorite child life specialist, Amy!




Getting ready to fill the Friday Toy wagon!

The light at the end of the tunnel

It's here, the final chemo treatment! He's scheduled to go inpatient Wednesday the 20th (8p.m.), and begin his final round the morning of the 21st. I'll take a flight out there Wednesday afternoon. I spoke with Kevin and Rachel today by phone. Kevin sounded as good as I've heard him in a very long time. He had energy, focus, and was clear headed. It seems like once his HGB finally came up from the most recent transfussion on Monday, that Kevin seemed to rebound shortly there-after. Rachel said she got some great pictures and video of Kevin delivering the toys to the different departments as St. jude. I'm sure she'll put them up on the site when she has some time. Kevin said he delivered toys to Radiation, B Clinic, MRI room, and Assessment Triage. Rachel said the nursed were even clapping for him. So once again, thank you to everybody who made this possible. I know when I shopped for the toys to donate, I found myself buying more and more as I imagined the kids looking through the treasure chest. Kevin was very proud of this moment. Kevin knows that he has many years of MRI's and follow up testing (speech, audiology, ekg, echo-cardio, IQ, psychological, to name a few), so he'll have his share of treasure chest visits over the years. We just hope that the testing will be the only reason for his future visits to St. Jude. I'm in Michigan, but I figured I'd give everybody a quick update based off of my conversation with Rachel and Kevin. Once again, the last couple of days he has sounded fantastic!

Best Regards,

Eric

Tuesday, August 12, 2008

Blood Transfusion for His Birthday

Kevin started his birthday at 9:30 am with Physical Therapy. Kevin, Scotty, Jake. Grandma Skousen and I finished the day off in the medicine room with a blood transfusion. This time it wasn't that bad and we got out of the hospital at the reasonable time of 8pm. We missed picking up Jake's antibiotic for his ear infection by 15 minutes at the pharmacy across town! So poor Jake (and me since I am the only one who ever gets night shift with him) is suffering through another night with his ear infection until we can him on his meds.

Overall Kevin was pretty ho-hum about it being his birthday, but who can blame him? I appreciate all those who called to wish him a happy birthday and let him know even though he had to spend it in the hospital it still was a special day.

Scotty is having a really tough time not feel betrayed by his older brother Kevin choosing to give all of the cool toys everyone sent (to donate to the treasure boxes at St. Jude) when he could give the toys to him if he really doesn't want them (this whole thing just confuses Scotty). After a lengthy discussion about why Kevin is doing this and that for his birthday he can do the same thing (we get him one big toy and he donates the rest) I am hoping I got through but more than likely I will have to rehash the whole thing one more time. Scotty almost always thinks of Kevin first when he get a new toy and almost always insist that we get Kevin one of whatever he gets. So I just think, like most adults, Scotty just feels overlooked and undervalued by his big brother he admires so much. It is a very adult feeling for a 5 year old to try to understand.

Last week each one of the kids came down with something or had something go terrible wrong. And now this week each of them is on their own course of medicine and treatment. Don't they know I am one person? Shouldn't this be a one at a time type of thing? Well at least I appreciate Jake for sticking to something like an ear infection, which is common and treatable. As for the other two, I hope next year the worst we get from them is a mild case of the flu!

So last week Kevin and Scotty couldn't see eachother for a couple of days while we got Scotty's rash all figured out. I really get the feeling some of the adults around Kevin and Scotty don't understand how important their relationship is to Kevin's healing. It strikes me as odd how we maybe able to understand how important our brothers and sisters are to us, but to understand, nuture and protect that relationship for our children seems like quite the different thing. By Friday of last week they were both verbalized how much they missed eachother and all day today Scotty kept telling the family who called, "I am staying with my big brother Kevin for a long time!"



A mom would needs a trip to some distant tropical island,
Rachel

PS There was talk today of Kevin going in for his last round of chemo this upcoming Saturday....so we will see!

Sunday, August 10, 2008

8 years old

We celebrated Kevin's birthday today, since Monday is usually a very busy day at the hospital. Also, Mike and I both need to fly back tomorrow so we can be back to work on Tuesday. First of all Kevin felt pretty good. No vomitting or anything dramatic to speak of. After our GCSF and labs in the medicine room, we went back to the target house so I could give him his 1 hour redimed of vancomycen. He'll be on that for another week, 3 times a day. Next, Scotty, Mike, Kevin and I went to play Laser Tag. We had fun playing air hockey while waiting for our first game. The equipmet didn't fit well the first round, and was getting quite heavy for Kevin. He was actuallyget quit upset, and we both pretty much shut it down half way through. The guy who sets us up, said he could adjust his gear so it at least fit better. The second game Kevin was much more comfortable. However, his gun stopped working, and didn't get fixed by the ref until close to the end. All in all he had a good time, but he really didn't get a good round in because of the aforementioned problems. Still, Scotty had a really good time, and the course was really cool. You could go to a second level and could take sniper shots to those below. I stayed with Kevin and pretty much tried to cover him. He still had a good time, but was ready to go after the second game. His strength and stamina is definitely very low right now. Next we went to the apartment and had pizza and cake and ice cream. He didn't eat much but enjoyed celebrating. Opening the packages was very enjoyable for him. It was incredible how much we have to give to St. Jude. Kevin really felt a huge amount of pride that people donated so many toys in honor of his birthday. He also got plenty, including some gift cards. Thank you to those who gave toys and a gift card to him. It was completely unnecessary, but very much appreciated by us and Kevin. We're going to have a wagon full of toys to deliver, and I know a few people called or emailed me indicating there package will arrive a little later in the week. Rachel's going to get a picture of Kevin delivering the toys that we make sure makes it to eveybdoy. Kevin and I went left the apartment and I went and got him Mouse Trap with one of the Gift Cards. He's wanted that for a while, and we had fun playing it late into the night. Saturday night Kevin stayed with Rachel, and a friend of mine (Ali) from St. Jude and I went to watch the UFC pay per view event at Buffalo Wild Wings. It was nice to get out. Unfortunately they had sattelite trouble and the fight was never televised. We were disappointed, but had a good time and met some really nice people. And boy oh boy did we eat, and then we ate some more. A fellow UFC fan we met there insisted on picking up our tab, which was very kind. Monday will be Kevin's actual birthday, and I'll at least be able to spend a few hours with him. He had a tough year, and we hope and pray that 8 years old will bring more laughs and more normalcy. It will be interesting to see how his strength returns, because right now I don't think he'll be ready for recess, and I'm a little worried about his appetite, but I suppose this will slowly return. If he doesn't want to go back to school right way, we certainly won't force him. He says he does, but we'll see how it plays out as we see how quickly he recovers. The school is 100% behind whatever he wants and needs to do. I've been reading up quite a bit about returning to school after cancer treatment, and I think Rachel and I or at least Mike and I if Rachel's here, need to meet with the Principal and his teacher. Even though they're expressing support, we may need to sit down with them just so there are no surpises. I think the kids and community as a whole will be rooting Kevin on and will be very supportive. He still gets cards on a regular basis both from all 3 of his teachers he's had. Everything will all work out, especially as his appetite and strength return. Overall he's lost about 6 or 7 pounds, so we'll do what we can to get him back. Thanks again for everybody remembering Kevin on his birthday. He loves that he's not forgotten back home.

Take Care,

Eric

Saturday, August 9, 2008

Target House Backpack give-away

As I wrote yesterday Kevin was released from being an inpatient. He was let out just in time to participate in the Target Back to School Party. Target had almost all of the common area rooms filled with school materials, the first room by the main lobby being completely filled with brand new backpacks. Scotty and Mike were with us as well. Both boys chose Incredible Hulk backpacks. No surprise there. Kevin has loved the Hulk since he was 3 or 4 years old. After they picked their backpacks up we journied to the various rooms in target house I and II that had materials such as pencils, markers, paper, notebooks, folders, erasers, blue, pencil cases, colored pencils, notecards, multiplication and division flash-cards, book covers, and more. It was an incredible experience for all of the children. Not only is it incredibly generous, but it gets the patients back in the normal every day frame of mind. You could see the wheels turning when Kevin made his decisions as to which backpack was cool, or which folders weren't babyish. He's very excited to be nearing the end so he can go back to school. Lucky for us, Kevin's school doesn't start until September 3rd; I know I talked to some parents who's school already started where they live. Kevin should only miss 2 to 4 weeks of school, and we'll make sure to get his teacher hooked up with the teacher here at the Hospital. Kevin's been keeping sharp with 1/2 hour of schooling 5 days a week. His writting looks pretty good. We'll worry about where he's at when the time comes. For now we just want him to be happy and back with his friends. The packages have been coming in for Kevin's birthday. Kevin will be so pleased in delivering the stuff to the Treasure box at St. Jude. I can't stress how important it is the first few weeks, for the children to have something to look forward to at the end of a scary procedure. It was especially rewarding after MRI's, sedation, and radiation. Whoever sent a package, you'll know the smile on the childrens faces when digging through the treasure chest is priceless.

Well we're off to the hospital so he can get some GCSF to keep his counts up. He'll also get more blood drawn. He'll probably need another Blood transfusion either today or tomorrow, as his HGB was pretty low yesterday. He's feeling well though, and even ate a bowl of cereal this morning for breakfast. In fact he woke up befoe I did, turned on the t.v. and purposely let me sleep another hour.

Take Care,

Eric

Friday, August 8, 2008

We R OUT

Counts finally came back up this morning. His ANC is at 600, which is above the 500 required to leave the BMT inpatient floor. Neither Kevin or I was interested in spending one more night there. He's feeling well today. We had a busy (and early) morning. He had his EKG and Echocardio test first thing. Next we had his audiology test. So far, Kevin's not suffered any hearing loss. We hope this continues, as Kevin's high dose chemo drug, Cisplatin can cause hearing loss, especially in the high frequencies. He only has one more round, so we'll hope and pray for continued good hearing. He's getting excited about his birthday. We're relieved he won't have to spend it inpatient. The nurses are proud of him, as he's told all of them he's donating presents (except for mom & dad's and a select couple of others) to St. Jude. He wants to deliver them himself to the different clinics (B&D) and recovery. That's about all that's going on here.

Take Care,

Eric

Thursday, August 7, 2008

.......and still counts are 0

Kevin's doing fine. I keep getting text and emails worrying about his counts not going up. As I said in prior posts, each subsequent round of chemo causes his counts to take longer to recover. Also, instead of a stem cell transplant, Kevin got the full bone marrow transplant this round. This alone takes up to 4 days longer then stem cells. He's fine. His infection is long gone, but they're still giving him Vancomycen. He even had a magician come to his room to give him a personal performance. Kevin liked it so much, that he came back the next day to show him some more tricks, and even the secret behind a few of them. He's tired of the hospital but so am I. Overall his spirits are pretty good considering he's been inpatient 12 of the last 17 days. We missed rounds this morning, as the doctors let us sleep. They'll come back probably later in the morning or early afternoon. We got the printout from the nurse though showing his counts still haven't recovered to the point they need to be. His ANC is at 100 and it still needs to be at 500. As long as we're out of here by the weekend, Kevin will be ok. His birthday is on Monday, so he's getting excited about that.

Take Care,

Eric

Tuesday, August 5, 2008

still here

counts are still 0. Everything else is fine. He's eating, he's eating ice cream, but he's eating. He's also very active, instead of just laying in bed doing nothing. He's either interested in watching a movie, a board game, the Wii or reading. All of this is good. I've pretty much resigned myself to the fact that I'm not going home this week. At this point the earliest Kevin would leave the hospital is Thursday morning, and it wouldn't make much sense for me to fly home Thursday, work Friday the fly back Saturday or Sunday for Kevin's birthday on Monday. Obviously I wouldn't miss Kevin's birthday for the world. Thank god for on line banking. Also thank you once again to Susan and Ed Clancy who are taking care of the odds and ends at my house when I'm gone. This includes feeding the fish, both aquariums (100 gallon and 20 gallon in Kevin's room). Also, the lap-top Ron & Sue Daiza got me for my 10 year work anniversary not only allows me to keep up with work, but it also provides me with something to do when Kevin's sleeping. I had a chance to see one of our friends from St. Jude, Heather walking around today at the Target House. She's had some rough times including a trip to ICU, so it warmed my heart to see her walking around with a smile on her face. I hope everybody back home is well.

Take Care,

Eric

Monday, August 4, 2008

Monday

As Eric mentioned when Dr. Hale told us what Kevin had, and how surprised he was Kevin wasn't in ICU, we are ever thankful for those praying for him and for God sparing him so far.

Today Kevin and Scotty spent most of the afternoon in the play room playing with Lego's or playing the game Life. Our friend Pam is here to help me this week and she was a huge help!! I would just get Jake almost to sleep and Kevin would have to go to the bathroom, she jumped right into action and was a huge help. She is really good with the kids and I can see Scotty taking a liking to her. Scotty and Pam were going to go to Target House for the camp they have going on in the evening this week but Kevin really wanted Scotty to stay and Scotty didn't want to go if Kevin couldn't go. I am so glad to see them supporting each other through this.

Rachel

Pretty lucky

Dr. Hale came in around noon today and gave Rachel and I more specifics on the type of infection Kevin has/had. It seems as I mentioned earlier that it's more commonly found with leukemia patients, and it's also a very aggressive infection when not treated quickly. Lucky for Kevin the infection was treated quickly and has not shown up on the cultures since Friday. Apparantly this type of infection is one that can be quite dangerous, sometimes traveling to the heart, lungs and brain. We're thankful St. Jude is diligant and admits kids immediately with a fever. His first round of chemo when he had a fever, and we ended up staying a few nights in the hospital with no infection. Having had this infection, that now seems like time very well spent. Dr. Hale stressed that he should be out of the woods at this point, and as soon as his counts are up he can leave. We're very thankful that the infection caused Kevin little or no harm. Although he's been admitted 3 times between chemo rounds, Kevin's been very lucky as far as side effects go. Outside of the nausea, lack of appetite and lack of energy, thus far he's bypassed the many more severe chemotherapy side effects. He even woke up ealier then I did this morning, and has played video games, had school, and went to physical therapy. we hope and pray this last upcoming round spares him of any complications. He's in a pleasant mood, and the current time of 8 p.m. he's not tired, even after arising this morning at 8 a.m. Hopefully we'll get good news tomorrow morning with his counts.

Take Care,

Eric

Darn Counts

Kevin's feeling well, but his counts are still not rebounding. In fact he had to get yet another blood transfusion this morning because his hemoglobin dipped too low. His ANC is somehow back to 0 from 100 (not much difference). We had a fellow instead of Dr. Hale his morning, so I really didn't get the information I was looking for. He's supposed to be in later today. I'll make sure Rachel talks to him. I was hoping for better news this morning, but the important thing is Kevin's feeling well and his counts not cooperating is a minor bump in the road.

Take Care,

Eric

Sunday, August 3, 2008

Turning the corner

I just met with Dr. Hale and two other Doctors who were walking rounds with him this morning. He indicated Kevin seems to have turned the corner. The infection he has grew very quickly when cultures were first taken, but since the Vancomycen has been given, has not shown up. It's a different infection then last time, actually one he said that's more commonly seen in Luekemia patients. This is an infection that often is accompanied by mouth sores and other more typical chemo oriented symptoms. Because he was given the antibiotics so quickly his symptoms were minimized. Also, the kids who are on leukemia protocols often have more severe side effects when they get sick because their bone marrow transplants are not autologous, but rather allogenic, meaning they get donors bone marrow not their own harvested marrow. At any rate, Dr. Hale said his counts came up a little bit (100) so if he starts to see a trend on Monday then perhaps he can be released on Tuesday, but Wednesday is also a possbility. His temperature has been consistantly below 99, so he's definitely responding well to the antibiotics. As I mentioned yesterday, because he's further along in treatment, his counts are taking a bit longer to come back up. Also because he fad a full Bone marrow transplant instead of just stem cells, that takes a couple of days longer. At this point Kevin should be ok in terms of further symptoms/side effects from the infection. We just need his immune system back so they can let us out.

Take care,

Eric

Saturday, August 2, 2008

Feeling a little better

I arrived in Memphis around 7 p.m. this evening, and am currently writting this entry from Kevin's hospital room. He seems to be doing ok. His fever is down, and he's not vomitting or the other. His counts are still at 0, but Dr. Hale warned us with each passing treatment his counts will take a longer time to recover. He'll be in the hospital until he doesn't have a fever and his counts are back up. He seems in good spirits, and is currently watch Spy Kids 1 movie.

I've had a pretty long day today. I woke up at 6 a.m. to stretch and get ready for the Advokate 5k. The race was a rousing success, with over 300 runners. The procedes went directly to St. Jude's brain tumor research. I met with the parents who organized the race, and they were wonderful people. Despite losing their daughter over 18 months ago, they still are fighting very hard for the cause and cure of brain tumors, specificaly in their daughters case Multi form Glioma. They did a spectacular job organizing the race. I usually start near the front, and when I turned around to see all the people before the start, it was surreal. There were 164 5k runners and close to 150 10k runners. Colleen the mother of the little girl the race honors, spoke just prior to the start of the race, and I almost lost it. My personal permformance was not good, as the hills proved to be a worthy opponent. I got 9th place but died so hard on the largest hill, that I actually had to stop for 30 seconds to catch my breath. Personal goals were secondary this race though, and even though Kevin went inpatient I didn't want to miss it. I went home for a few hours then off to the airport. I'm not sure how long I'll be here this time. Hopefully Kevin recovers quickly. We'll continue to keep everybody posted.

Take Care,

Eric

The baby in the room next to Kevin's

Sulley has been in the BMT (Bone Marrow Transplant floor) I think every time we have been inpatient. I believe his mom said he has been there 40+ days. He is 15 months yesterday. This time Kevin's room is right next to his. Yesterday there was LOTS of family (more than the allowed amount) in Sulley's room. There were lots of people who came out crying. Without asking, it was apparent what was going on. Last week Sulley was out in his car that his parents push around while I was walking Jake around in his wagon. Sulley had fallen asleep at the wheel. Sulley has ALL and AML (two different type of leukemia if I understand correctly). His prognosis was never good his mom said yesterday when I spoke to her, but she always had hope. Now she and her husband, Sulley's father, has to let go and give him back to God, apparently He needs another angel.

There is another family who got the bad news that their daughters cancer has spread last week and they are in the planning stages for end of life treatment.

There are times when I walk the halls of St. Jude and can feel the angels around us, some are human and come in the form a parent supporting another parent, some come in the form of nurses who throw their protective barrier to the side and become a friend even though it is not recommended, some angels are the friends & family that let us know we are not forgotten. And some you can't see you can just feel; something beyond this world trying to lift up those of us here when life seems hard. To me it is a reminder that this is not the end, that I am adult in this world, but still a child in God's world. My head can understand this yet my heart breaks for the parents and siblings losing apart of family so young, so with bodies so little, given little time on this earth.

Rachel

movie time

video

Friday, August 1, 2008

"When we are done with cancer"

Scotty wants to take karate with his brother Kevin "when we are done with cancer". Or so he announced today in Kevin's hospital room. Just like this is a temporary set back. We will get back to normal soon. I love his nonchalant matter of factness. Scotty has all sorts of crazy stories these days. He is really an interesting person.

It looks like Kevin has a meaner type of staph infection this time. We aren't sure exactly what it is but maybe tomorrow we will know.

Mike is staying the night tonight with him. Kevin's spirits lifted tonight when Mike and Scotty came in. Kevin has been short tempered with me this week. Then I realized tonight he hasn't gotten to spend much time with Scotty this week because we stayed in separate places. I will try next week to make sure they spend more time together. It makes a big difference with Kevin and getting better.

I am tired. It was a long stressful week. Kevin has had 2 blood transfusions this week and one infusion of platelets he had an allergic reaction to. Luckily he just broke out in hives and once I realized why he was itching some benadryel took care of it pretty fast.

I was happy to see Mike today. Laura and the Zubes were a big help this week. I really appreciate all of the help we have gotten. I can't do this alone with all 3 kids. They blessed me with a moment of getting to go to Target by myself. I don't think I have be anywhere alone since getting my hair cut weeks ago.

Rachel

Fever

Rachel called me late tonight and told me Kevin's been admitted to the BMT floor. Unfortunately for the 3rd straight round Kevin has a fever before his counts came back up. I don't know details, but I guess he's pretty out of it. I hope and pray it's not a bad infection. I still don't know if I'm going to fly out tomorrow or run the race Saturday morning---kind of a moral dilema, as the race benefits brain tumor research at St. Jude. She's assured me he's okay, but he'll be in the hospital until his ANC is above 500. I'll fly out and join my hospital roomate, either Friday or Saturday. My sister is spending the night with him tonight. I'll make sure to keep everybody posted as I hear more.

Take Care,

Eric