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!