Happy Birthday!

Happy Birthday Griffin!
Your age is written in single digits, but your life experiences suggest one whose years have seen beyond the 'Golden Days.' Will you remember this particular time? I think back to my earliest memories and remember the times when I was the most happy.
Your path seems fraught with many twists and turns, and I come to my own conclusion that your memories will be varied. I do not doubt you will remember these times.



Along with each twist and turn your mother has made sure to offer you only the best. I know your mother, she would want only the happiest of events to balance out the not-so-choice 'offerings.' With that being said, I ask you to remember deep in your heart the smile that you wore the night of your 3rd Birthday Party. Here are some pictures that captured the day you shared with Kailey and Hudson. The extravaganza of your birthday culminated at the Carousel of Elk Grove Village. Your birthday song was sung to you in front of your carousel cake. So many sights that late night to make one think that you partied like a rock star.

5th Stage Starts Now

With cool temperatures underway, the flu also finds it's way into homes and lurks waiting for the right host. You can be for sure that Gretchen and Jon maintain strict hand washing techniques whenever entering the Maks' home and engaging with the Maks' children. At the beginning of this week (October 20, 2008) Griffin visited the Children's Memorial Hospital for a routine spinal tap and medication administration of chemotherapy. He had underwent the spinal tap procedure, but due to complications of possibly hitting a blood vessel the spinal tap was canceled. The spinal tap was rescheduled for next Monday and at that time chemo meds will be administered via the spinal fluid. Griffin returned home by Monday afternoon.

Griffin has been hanging in and around the house with his siblings. What else would a soon-to-be 3 year old be doing? Over the weekend, he helped his Papa Jon decorate the house with Halloween decorations and enjoyed the crisp autumn weather. Here are a couple images of Griffin and his siblings enjoying the autumn leaves.



Albeit, his rash remains since his admission into the hospital (a couple weeks ago), and his hair is disheveled in the front and thinning around the crown, his bright shining smile remains.


Griffin continues to follow the doctor's schedule and medication regimen. He has officially entered the 5th phase of his medication protocol, and is scheduled to visit the hospital once a month, for the next 3 years. At these scheduled visits, Griffin will undergo a spinal tap and chemotherapy administration. The doctors have told Gretchen that Griffin should not lose any more hair, and a much needed appointment at Kid Snips has been scheduled.



Listening to Gretchen's voice talk about the plan makes me feel a relief, kind of like, "Whew, Thank God, we have been able to get this far." And I do Thank God. My sister, Gretchen, has always had the penchant for creating a 'light goodness' to issues and factors and stories. But I can only imagine what lies behind those words, because if this were me and I wore my sister's shoes, I would want to scream my lungs out and exclaim,

"Why? Why my Griffin?"

There are no feasible answers that can allay my fear nor those of my sisters. But I continue to pray that God continues to give Gretchen and Jon the strength. Strength to get on with their daily lives in light of all of 'This.' I continue to pray that Griffin's body remains strong despite the fact that these medications that can eradicate the Leukemia may also destroy parts of his body. I continue to pray that Everest, Hudson, and Kailey will continue to thrive and know that Love surrounds all of them.

Please continue to send your positive energies for the Maks Family. Continue to pray for Griffin and his family.

Fever & Admission

Griffin's weekend was spent in the Children's Memorial Hospital after he developed a fever. Griffin's temperature started at 100.9 and began creeping up to 104.7. The high temperatures guaranteed a visit to the Emergency Room. Jon and Gretchen did not delay transporting Griffin. By the time Griffin was 101 he was en route to the hospital.

Griffin was seen in the emergency room and presented with fever and a generalized red rash on most of his body. He was in the ER for about 5-6 hours before being admitted into the isolation rooms of the oncology unit. On the floor, a number of doctors examined Griffin, and it was determined that he would need intravenous fluids and observation.

Jon and Gretchen remained at Griffin's bedside. Hudson, Kai, and Everest remained with MamaRita and Grandpoppy, and Grandma Aida. Griffin received 1 unit of a blood transfusion prior to leaving the hospital. Talking to Jon this morning he stated that Griffin slept through the night.

Please continue to pray for Griffin Maks and his family.

Update status post LP & Cytoxan

Gretchen called about 11:35 am on Thursday morning to report Griffin's LP (lumbar puncture) procedure was over. Griffin was able to get through the ordeal with no complications. His face was red all over from screaming and crying and he may have some broken facial capillaries.

Griffin had been at the Children's Memorial Day Hospital for the Cytoxan infusion. There was a tiny blip when Griffin's port-a-cath needle became disconnected while Intravenous fluids were infusing, but no harm was done. When all things were said and done the family got home about 8:00pm.

Talking to Jon last night he mentioned that Griffin enjoyed introducing all of his friends. Griffin had no reservations walking up to staff and/or patients. Griffin is a "little celebrity" over at Children's.



Griffin was up throughout the night with nausea and vomiting. A common side effect of the chemotherapy medications. Despite the administration of oral liquid Zofran (a medication for nausea and vomiting), Griffin continued to have waves of episodes and dry heaves.

Griffin's siblings are staying with grandparents and should return home by today.

Please continue to pray for Griffin and the family.

Have you been waiting?

Hi Folks! Yes, we are still here. A lot has been happening for Griffin and family. The Maks' are busy acclimating to their jam-packed schedule. Markings on the calendar indicate the start of school for Griffin and his siblings. There are also reminders for soccer practice and games, violin lessons, Tae Kwon Do practice, and hospital visits and procedures.

Since the last posting Griffin has had treatments that follow the planned schedule. Not to say that the events that have passed are not important to note here on the blog, but Gretchen and Jon are super busy.

Griffin has been attending classes at the local park district Monday through Wednesday for two hours each time. He enjoys the playtime with his siblings and playing with the tool set play area. He especially enjoys the different art projects, playdoh playtime, and floam.





Griffin has continued his involvement with all of his therapies. Gretchen stated,
"All the outside daily stimulation/ socialization helps keep a constant state of order." Griffin and his siblings are not only learning the valuable lessons of play, but also understanding the concept of rules and continuing an established routine.

The blog has not been updated for a long while and we Thank you for being extra patient. On Thursday, September 25, Griffin will be on his 29Th day of the Standard Delayed Intensification Phase. This is the 4th phase of Griffin's treatment.

Tomorrow Gretchen and Jon will be at the hospital for Griffin's procedure. The first part of day Griffin will have to undergo yet another lumbar puncture (LP) also called a spinal tap. This LP will be done without general anesthesia. Usually this procedure with the anesthesia takes about 2 hours, but Griffin has to undergo a new chemotherapy regimen. The medication that Griffin will have to receive is called Cyclophosphamide (Cytoxan). The infusion time for this medication is planned to take 6 to 8 hours.

In addition to this medication, Griffin will also be receiving a slew of other medications. They include:

Thiogiane (sp?)via the port-a-cath.

Cytarabine via intravenously and then continue daily at home as a deep muscle injection for 5 days.

Griffin may have to stay overnight at the hospital depending on the outcome of all the procedures.

On a side note, Griffin's hair is beginning to show signs of thinning. His hair may look disheveled and unruly covering his eyes, but Gretchen and Jon are nixing the idea of giving Griffin a trim or cut. They are keeping his hair until it starts to fall out.





Gretchen and Jon are very thankful for all the e-mails, cards, and phone calls. They are also thankful for the gifts of toys, books, photo albums, and food.

The Maks Family ask for continued prayers and positive energies.

Together as One and Hand-In-Hand

The summer days are dwindling down and the Labor Day Holiday is upon us. The August summer nights make for sleeping with the windows open a pleasant and comfortable environment. But in the Maks family household comfort is a thing of the past and I quote from Jon, "because Griffin had to vomit three times because of the chemo meds."

Thank you to all the loyal and supportive followers of the Griffin Maks blog for being patient and checking often for updates. Here is what has happened:

August 21, 2008

Griffin's neutrophil count was very low hitting numbers of 200, with normal limits above 1000. griffin visited the Children's Memorial hospital accompanied by his older brother (kuya Everest). Everest was up close and personal for the second time, and experienced the pain and hardship that his younger brother Griffin has to endure. This particular week was the last of the Third Phase. Griffin received his intramuscular ERWINA injection, and 6MP, and Methotrexate.

Following the chemotherapy protocol Griffin had a week off from all chemotherapy medications. Which brings us to August 28, 2008. This date is the first day of the Fourth Phase called Delayed Intensification. As Gretchen explains, "this is the brutal phase" From what the doctor describes this is the phase that Gretchen and Jon may have to anticipate blood product infusions, hospital stays due to fevers, and adverse reactions to new chemotherapy medications.

August 28, 2008
On this particular day, Griffin was accompanied by his uncle, Tito Ashlin. Ashlin also saw first hand the procedures that Griffin must receive in order win the battle against Leukemia. As Ashlin explains how he felt, he states, "Overwhelmed." Ashlin also observed the different families also in the waiting room who may not be there for the same reason as Griffin, but looked sick. Ashlin continues to describe the experience as, "Everything was all new." On the lighter side, Griffin felt proud to introduce his uncle to all of his hospital friends, doctors, nurses, staff, and some young patients.


Griffin received a lumbar spinal tap with methotrexate intrathecal injection. Vincristine and Doxarubicin infused into his por-a-cath. Griffin also started the dreaded Decadron. It's the "make-you-insanely-hungry-and-mean" drug.

Gretchen and Jon are preparing for the inevitable changes of Griffin's outward appearances. For example the Doxarubicin can cause hair loss, mouth sores, and long term heart damage. A romp through Evanston's Northwestern University Campus allowed for memorable images of the Maks family unit. Throughout this harrowing journey they travel the path laid out hand-in-hand.


Please continue to pray for Griffin and his family. Say hello and leave your comments for Jon and Gretchen, this keeps their spirits high.

Griffin and his Gal Pals

Griffin has been out and about with his personal entourage of not only one but two beauties watching over him and his siblings. Amy M. and Michele Joy M. were on hand literally to give Gretchen a hand with Griffin's daily appointments. The events involving the two lovelies spanned over a few days, but let us just say they are probably ragged tired.


No task was too big to handle for this dynamic duo. The girls offered extra hands, eyes, and extra hugs which in turn helped Gretchen and Jon immensely, and thus helped Griffin. I could list all the things that they did, but there is not enough room. Like it isn't hard enough to take care of a 6 year old (Happy Birthday Kuya Everest!) and 2 1/2 year old triplets, I can only imagine, I am sure that what these two gals did helped to get the job or jobs accomplished.
Thank You Michele Joy and Amy, you two rock! Get some rest!

WTMX Fundraiser for Children's Memorial

Hey everybody! We just wanted to plug the 9th Annual Radiothon for Children's Memorial Hospital! This is the hospital that Griffin attends weekly, and will be attending for the next 3 years. Proceeds go to buying crayons, play-doh, coloring books, et. al. in addition to medicine and staff.

More information here:

http://www.wtmx.com/home.php

or tune your radio to 101.9 and listen in!

A Night in the Life of Griffin

The night routine started with the usual rituals: reading to them, baths and pajamas, and getting them into their slumber. Gretchen put Hudson, Kaily, Everest and Griffin in their rooms and with some outbursts, they finally fell asleep. Another long day, Gretchen sighs as she puts away some of the clutter.


In the triplets room is Hudson and Kailey. Hudson is balled up in his crib breathing steadily. Kai-Kai sprawled on top of twenty of her favorite stuffed animals in her crib. Everest is asleep on mommy and daddy's bed. Griffin in the same room as Kuya Everest. They both love to fall asleep in front of the T.V.. Its a bad habit, Gretchen thinks to herself, I have to break them out of this. But, this is how it needs to be for now. When Griffin goes to the hospital for medications or an overnight observation, the television is what comforts him in the strange room. These small conveniences become Gretchen and Jon's salvation when their emotions are close to their limits.


Gretchen looks at the clock and sees that it is 935pm. She takes a mental note that in about twenty minutes they will start. Nightly, Jon and Gretch give Griffin his chemo medicine. It has to be at night because when he's awake, he fights it. They've tried a hundred ways to trick him into taking the medicine including gummy bears and juice. All attempts end horribly. Griffin defiantly spits it out or vomits or fights with all his strength to not swallow. They were told by the doctors that this medicine tastes exceedingly horrible. Not to mention, it makes the kids feel very sick. Kids learn to associate this yucky stuff with feeling yucky. Better to just feed it to Griffin at night, when he's too sleepy to fight.


It is now 10pm. Gretchen calls out "Jon it's time."

Gretchen watches as he puts on his rubber gloves. Taking his cue, she puts on her gloves. They must wear gloves to protect themselves when handling this stuff because it is highly toxic. Jon explained to Gretchen many times why it is so bad and if it gets on your skin it will make you very sick with stomach ache and dizziness. Sadly I have to feed this poison to my son. Gretch quickly pushes the sad thought out of her mind.


Jon and Gretch switch off evenings to make the concoction of different medicines. It is Jon's turn tonight. Jon talks himself through the concoction. "A tablet of 6-MP. One tablet of Prevacid to aid in preventing the massive stomach irritation or ulcers due to the chemotherapy. Decadron. A little bit of water." Jon shakes well.


They both go into the bedroom. They see Griffin lying there peacefully. His infant snoring and the audio from the T.V. are the only sounds in the room. The bluish light from the television allows them to see Griffin's crib. He must be in their room because he needs to sleep by them in case he has a reaction. They want to be there to hear him and quickly nurse whatever needs he has. With Griffin in their room they spare the kids in the other room from sleepless nights hoping to give even a little normalcy to their lives.


Jon lifts Griffin out of the crib and lays him on a makeshift bedding on the floor. This is strategic because they need the wrestling room. Jon begins to change his diapers. The movement rouses Griffin and he begins to whine. He knows what is coming. After his diapers are changed, Jon lays Griffin in Gretchen's arms.


Sleepy and agitated, Griffin says "Papa no..." Griffin's whining is getting louder. Gretchen begins to tighten her hold around Griffin. Jon puts the syringe containing the concoction in Griffins mouth. "NO!!" Griffin starts to fight. "No," he gurgles. He hears his mommy saying "Its ok Griffy, its ok." He is crying loudly now and fighting to free himself from mommy. Jon has to slowly inject the medicine so Griffin can swallow it. If they put too much, he'll spit it out or choke.


"Swallow!" Jon tries to be strong.


"You got to do this now so you can go back to sleep" comforts mommy.


Griffin is fighting hard and crying loudly. "No, no, no." Gretchen tries her best to keep him calm. There are times when he works himself up so much that he vomits it all up. On those nights they have wait until he falls back asleep, until he's calm, and try all over again. One night, it took them three tries and woke up the others. That was a hard night.


They go through a flood of emotions in these few minutes that seems like 100 years. They are drained by the emotions of frustration, anger at the disease, fatigue, sadness for their son, asking God why? But they must force him to take the medicine. "You have to drink it!" Griffin must drink this poison so he will win over this...


Finally the last of it is swallowed. Griffin is whimpering in bed falling back asleep. He is back in his crib. Mommy wipes his face while Daddy cleans up the bedding and wipes. Thank God. The medicine was administered successfully. Gretchen thinks over the past few nights. Last Tuesday was one of the easier nights. Tonight I would gauge it at medium difficulty, she thinks to herself. Tomorrow night we'll do it again. Lord, please, don't let tomorrow be like last Friday. And she looks ahead thinking this will be our nightly routine for the next three years, until 2010...

Severe allergic reaction but back on track

Last week was a difficult week. The next step in Griffin's treatment was to be a dose of pegaspariginase. On the left is a photo captured by Mommy of Griffin happily sitting on an elephant in Children's Hospital's atrium. Shortly after this photo is when the allergic reaction to pegaspariginase hit.

The allergic reactions to the medication put Mommy and Daddy in a whirlwind of worry because of Griffin's already compromised immune system. The hospital admitted Griffin to control the reaction as well as to observe him.








Griffin is at the day hospital, fast asleep. He's receiving multiple emergency IV medications to treat the allergic reaction -- including benedryl, epinephrine, and solumedrol. His vital signs are constantly monitored, especially his respiratory rate. A possible complication includes respiratory arrest (he might stop breathing) or cardiac arrest (his heart might stop.)










Overnite at the main hospital for observation. He was responding to the emergency treatments, albeit slowly.



















The doctors consulted and decided on the substitute medication. We have already started with the new schedule:

July 17 -- Jon went with Gretchen and Griffin for his 1st injection of Erwinia-- this is the medicine that has replaced Pegasparaginase (the one that caused the severe allergy). Griffin saw his friend Brooke, who also suffers from leukemia. Everything went well.

July 21 -- tolerated the 2nd Erwinia injection; no complications!

July 23 -- receiving 3rd Erwinia injection

July 25 -- 4th shot of Erwinia

July 28 -- 5th shot of Erwinia

July 31st -- 6th shot of Erwinia; also to receive IV vincristine and intrathecal methotrexate (injected into his spinal canal); he'll get labwork.





Recovered from the allergic reaction, Griffin's treatments are back on schedule! Here is Griffin climbing "the Dragon" at Old Orchard. He's still playing and feisty despite the weekly IV chemotherapy and daily oral chemotherapy every night. And yes, his hair is still real!

Griffin's Port-a-Cath

JULY 3, 2008

A couple of updates to note. Griffin's days at Children's Memorial continues to be Thursdays, and with the July 4th holiday the same day hospital was double booked. This particular day was super busy for all the workers and for Gretchen and Griffin. Fortunately, Ninang Weng and sister Kailey came along for the ride and helped keep time moving. Kailey had so much fun playing with her brother Griffin and looks forward to the next time she is allowed to visit.


Griffin and family enjoyed a couple of family bar-b-ques and birthday/graduation celebrations over the weekend. It was during this time that Gretchen and Jon noticed a protuberance from Griffin's Port-A-Cath site. It seems that one of Griffin's stitches is 'peeking' out from under the skin. The cath site looks more like a nuisance than it is since Griffin is not complaining of pain nor itching. The skin and area around the site continues to maintain it's integrity, and no infection is observed. Check out the next couple images.





JULY 7, 2008
Gretchen and Jon maintained close observation of Griffin's site and had it checked out at the day hospital this past Monday July 7, 2008. Per a surgical resident the Port-A-Cath is in no need of revision nor the suture need not be removed.


After the visit to the hospital Griffin remained his usual 3 year old Griffy-self and enjoyed a popsicle with his brothers, sister, and cousins happy to see him back home.


Talking to Gretchen today, and it seems another stitch/suture is 'peeking' out from under Griffin's skin. Gretchen and Jon continue to communicate to the staff at Children's and will continue to monitor Griffin.

As for Griffin's medication regimen, decadron has been added to the mix of oral chemotherapy medications and there is no 'scheduled' visit to the hospital this Thursday. Please continue to pray for Griffin's health and do not forget to leave your comments.

Griffin Discharged

Griffin went home by lunchtime Friday afternoon. After observation throughout the night at the hospital, the doctors deemed him ready for discharge. No visible signs were noted from his allergic reaction. If there was anything that he brought back from the hospital it was his smile and laughter. Griffin was happy to be at home with his siblings Kailey, Hudson, and Kuya Everest.

Griffin admitted to Children's

In celebration of the Summer time Griffin has been able to enjoy more public outings. His face has graced a couple family gatherings and picnics. It would be hard to pick Griffin out from the gaggle of kids that swarm the playground. His illness is not readily seen. Even if Griffin were laying down in the Same Day surgery beds one would be hard pressed to know that Griffin was the patient. Amongst his peers he is just like any other boy or girl laughing, smiling, running, and crying out with joy. He has no reservations when it comes to playtime and doing all things fun. Why should he have to worry? And what would Griffin have to worry about? Of course when it comes to Jon and Gretchen, the day's activities are fraught with 'What Ifs." What if there is someone who is sick at this gathering? Or What if Griffin gets hurt while playing with the other kids? What if Griffin becomes ill?


The weeks have passed and many events have taken place. Griffin's schedule remains planned out to visit the hospital every Thursday. The Consolidation phase for Griffin has been a 'coasting' time. The type of procedures that Griffin has had to endure in the initial weeks has decreased for this phase. So here is a recap of the events since June 5, 2008.

June 12, 2008

Big brother Everest accompanied Griffin for his weekly visit. Everest had already known about Griffin's illness. Everest showed Griffin compassion and understanding and continues to do so beyond what an almost 6 year old should have to know. But on this particular Thursday Everest was able to truly grasp the idea and see what Griffin has had to endure all these weeks. Everest had to roll out of bed at the crack of dawn, like Griffin, to travel to the Children's Hospital. Everest met some of the hospital staff and saw first hand the different events that take place for Griffin. Everest enjoyed the day and commented on the little 'extras' that Griffin experiences. In reference to the wall mounted television above each Same Day hospital bed, food service, and video games, Everest commented,
"It's like a hotel in here"
Everest also said,
"This is the good life."

The day was long and both Griffin and Everest's patience was wearing thin, but thankfully to the efforts of Ninang Rowena who also accompanied the crew, their was an extra eye to keep the kids on track. Check out Gretchen's images of that day.

June 19, 2008
On this Thursday, Gretchen followed the advise of the hospital staff, and arrived extra early. The procedure that Griffin was to receive was planned to happen early and Griffin and Gretchen had planned to be home before lunch. Unfortunately, there were emergencies with other patients in the procedure suite, and Griffin was bumped back on the schedule. The day was long and Griffin was very, very hungry, and probably cranky. Fortunately, for Griffin and Gretchen, Tita Julie, brightened up the day and helped bide the time until the day was over.

June 26, 2008
Three weeks have gone by since the last posting. I just got off the phone with Gretchen and have news to report. Griffin was scheduled to have blood draws and injections of a medication called Pegasperiginase. The protocol after administration of this medication is to monitor the patient for possible allergic reaction. So after the medication was administered, unfortunately, Griffin did present with an allergic reaction. Immediate medical attention was given to Griffin in addition to medications to counteract the reaction. Griffin has been on doses of benadryl, solumedrol, and epinephrine. He was currently admitted this evening and Gretchen has been by Griffin's side throughout all the events. Tita Julie was also present during the day and was first on hand to observe Griffin's initial allergic reaction. Jon has been busy getting the kids ready for bed with dinner and a bath. He is on his way to the hospital, and MamaRita will be on hand with Everest, Hudson, and Kailey.

Gretchen and Jon want to Thank Everyone for the cards, notes, prayers, and positive thoughts. Please continue your prayers for Griffin's return home.

Consolidation Phase Begins

Today Griffin went to Children's Memorial Hospital for another set of procedures. Griffin had a bone marrow aspiration and biopsy, a spinal tap with intrathecal chemotherapy of methotrexate, an injection of pegasperiginase, and vincristine through his port-a-cath. Would you think that this big guy would still be smiling? Of course he would especially when Ronald McDonald's is in hand after the procedures were done. Not to mention the atmosphere in the hospital maintains to keep the patients occupied and happy. Around the corner of every hallway there are little surprises and treats. I mean just signing up at the front desk of the day hospital, Griffin receives a sticker. After that he has to get vital signs recorded, that means he gets a Sesame Street Ernie beanie figure. Getting his blood drawn, he gets more stickers. Sitting in the waiting room he gets crayons and a coloring book. There is even a play/arts room that the patients use to help distract while enrich their minds all led by volunteers and dedicated staff. No complaints here. Just a whole other environment to keep the young kids entertained and their minds off their illness. And it helps a whole lot.
Griffin had a long day with only minor outbursts and crying. He remained behaved and some staff thought he was a brother of a patient. He maintained a smile throughout the day. After taking a siesta during the car ride home, Griffin was greeted by his big brother and GrandPoppy. Please continue to pray for Griffin and his family. And do not forget to leave your comments.

Griffin's mom and dad

You already know them. Gretchen and Jon. With the blink of an eye the lives of Gretchen, Jon, and their family changed. They soldier on everyday. Their goal is to help their son, Griffin, defeat Leukemia. This is a war against an enemy that will be battled on many occasions. Griffin's doctors plan for three years of chemotherapy. Every step forward is one towards victory. The battles will be fought at home, at the hospital, and also from within. Tomorrow's battle will be another scheduled bone marrow biopsy and spinal tap with the administration of chemotherapy.
Are you ready to help fight this war? Keep Griffin in your thoughts and your prayers. Many thanks of gratitude to all those that have sent gifts, cards, and emails of hope, strength, and prayer.

MRD results

The MRD results are negative. Gretchen asked the doctor what that means and it shows that Griffin has less than 1% of Leukemic cells. Griffin will still continue with the consolidation phase. Here are some more pictures from Gretchen and Jon.

OP & P

Since Wednesday, May 28, Griffin came home from his procedure tired and sleepy. There was a slight bump in the road prior to the procedure. Do you want to hear about this 'bump'? Should I be ambiguous about the incident or should I be specific and use names? But what is the point of bringing up the past? The most important part of the day was bringing Griffin back home. I should just say that the person that failed to follow Operational Policy & Procedure will never fail again.
On Thursday evening Griffin developed a fever, rapid respiratory rate, and difficulty breathing. Griffin's temperature was high enough to qualify for a visit to Children's Memorial Hospital. After numerous blood tests, chest x-rays, and physical examinations, Griffin was diagnosed with pneumonia. He was given intravenous antibiotics and sent home. The doctors say he developed pneumonia due to being intubated for his procedure and/or possibly because his activity level is at a minimum. This reason is the proper condition for allowing fluid to collect in his lungs. Griffin's medications make him tired and he tends to lay down most of the day. If he has to travel he sits in his stroller. Since being diagnosed with pneumonia, Griffin's siblings have been sent to stay with grandparents until Griffin is no longer contagious.
Today Jon and Gretchen are waiting for results from the bone marrow biopsy. Three different tests are performed on the bone marrow. One test is a visual test. The second test is a flow cytometry test that is used to measure the amount of DNA in cells, specifically it is used to to determine how well a cancer may respond to a particular therapy. The third test is called MRD or minimum residual disease. This latest technology is a highly sophisticated tool that looks for any remaining cancer cells, even single cancer cells. Ideally the results that Jon and Gretchen are waiting to hear is an MRD value of 0. This would be suggestive that the cancer is responding to the chemotherapy and it also means Griffin has a higher chance for survival.
This Thursday is the second phase of Griffin's chemotherapy. The consolidation phase. This phase kills the rest of the leukemic cells left. Every Thursday this month Griffin will have a bone marrow aspiration and biopsy and spinal tap. The weekend has been rough and coping with Griffin's illness has been hard. Gretchen and Jon have started to read the blogs of other families who also have a child with Leukemia. Reading the blogs offers support and then also can be heart wrenching when reading about the children who lose the battle for life. Jon and Gretchen thank everyone for the many gifts, food, cards and emails with words of encouragement and support. Please continue to pray for Griffin and his family. Check back for the update on the MRD value and more pictures being sent from Gretchen and Jon.

Griffin is scheduled at 8:45AM

Gretchen and Jon left for the hospital at 6AM for the scheduled appointment at 8:45 this morning. Griffin is H-U-N-G-R-Y. He had to stop eating since last night. The port-a-cath will be placed into the upper region of his chest. Left or right side is still to be determined. During the time that he is under general anesthesia he will also be receiving a bone aspiration, a spinal tap, and methotrexate placed into the spine. Direct all your energies to defeating 'this Monster.' Please continue to poor your prayers out to Griffin and his family. Pray that the Doctors and staff are successful while working on Griffin. Pray that Jon and Gretchen continue their endurance and strength. Pray that Griffin comes home safe and with minimal discomfort.

Decadron

Think of this word when you view the images of Griffin. The first couple of images are of Griffin in the beginning of May after initial diagnosis of his Leukemia and treatment.Decadron also called Dexamethasone has many uses in the treatment of cancer. This medication is classified as a glucocorticosteroid and plays an important role in the treatment of Leukemia. There are a list of side effects that can be caused by taking the medication. The first few side effects include, increased appetite, irritability, and difficulty sleeping.
There are times when Griffin eats with so much gusto that you want to say to the guy, "Hey don't forget to breathe." I know it sounds too extreme to comment this way, but it's true. When Grif sees food, he wants it and he wants it now. Do you know any kids that like salad? Fresh fruit and vegetables are not on the list of foods of many kids. And these foods are Griffin's list of 'Foods to avoid.'One excuse comes to mind when you see a reaction like this; it must be the medication.
When Griffin does not get to have the food he wants and sees he gets mad. Not just crying mad, like kicking and screaming mad. It must be the medication. And when he is up late crying for no particular reason and he just wants mommy or papa to hold him, then it must be the medication. The decadron is scheduled to end this week.
Jon and Gretchen are determined to get through all of 'this.' And another hurdle will take place on Wednesday May 28, Griffin is scheduled to have port-a-cath placed. A small device placed under the skin. It empties into a blood vessel and makes it easier to give chemotherapy and to take blood for tests. He will be in the hospital for same day procedures and he will be given anesthesia. Please continue to pray for Griffin and his family.