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.

Short update

Hi all, Gretchen wanted to remind everyone that today is the last day to volunteer to become a bone marrow donor. Griffin and his parents are scheduled to meet with a team of oncologists to review Griffin's response to chemotherapy and discuss the next round of chemotherapy for the next five months. This is the second stage of the projected 3 years of Griffin's chemotherapy. Stay tuned for recent pictures and more updates. Please continue to pray for Griffin and his family, and don't forget to comment. Gretchen and Jon check the blog and love to hear from everyone.

All under one roof

Here is a picture of Griffin at home with all of his siblings. Griffin has been home with his brothers and sisters and everyone is adjusting. Isn't that what everyone has to do? Adjust. Let me give you an example. Griffin is now in his parent's room where his older brother Everest use to reside. Everest now stays with his other brother Hudson and sister, Kailey. On top of Everest's bed is a mound of stuffed animals and bears. Everest likes to nestle into the pile of plush toys when he goes to sleep at night. The plush toys keep Everest feeling safe and secure. Everest is adjusting. Here is another example. Kailey and Hudson are continuing their weekly schedule as planned. What use to be the three younger kids is now only the two. They are adjusting as well. Here is yet another example. Griffin has been experiencing loose stools (bowel movements), to the point that one night he had 7 episodes of the dreaded 'D' (diarrhea). Gretchen brought Griffin to the day hospital/ clinic where he received intravenous fluids. The doctors checked out Griffin's blood work and sent him home the same day. Griffin's body is adjusting to the medications. Gretchen and Jon are continuing to keep the family under one roof and attending to all of the kids different needs. Gretchen and Jon are adjusting. The picture of the family was done this past Sunday. Griffin and the family are standing in front of a poster board that was put together by a majority of triplet moms and their families that live in the Edison Park neighborhood. Gretchen and Jon thank everyone for their show of support and love. Continue to pray for Griffin and his family. Pray for their continuing strength and endurance with all the changes that happen everyday.

Happy Mother's Day

Early this Sunday morning Gretchen called me...

"Can you please enter a blog to greet my family and friends a Happy Mother's Day from the Maks Family?" she requested. She asked if I could include an excerpt from a letter to her that particularly inspired her. [sigh]...My friend...it is just like her to think about others. She wants to send a Happy Mother's day wish to mothers out there when she her personal life is a hurricane.

In that same conversation where she asked me to blog, she was telling me about the horrible effects to Griffin's little body coming out now from the chemotherapy. Every hour he has a diarrhea episode of the foulest smells. All day, Griffin is in such constant discomfort that he just cries to be held. The other kids are home now and want to reconnect with mommy who was gone for two weeks. In the middle of this, she strategizes about how to establish "normalcy" with the family while giving Griffin the nurturing that he needs. Wow...

Gretchen wanted me to quote from a letter from Janet Bleyl, the founder of Triplet Connection. Janet wrote:

"How would you feel if you lost everything you had but then got it all back again? It is my hope that you will get it all back again and that what you learn in the process would become a miraculous gift in loving and appreciating every single day of your life."

I used to complain about the kids, Gretch told me. The mess, the routines, the cleaning, the bathing. "But give it all back to me now and I would love every minute of it. As long as my Griffin is healthy those days would be pure joy."

I ask God, why my friend? I know that life is about facing trials and no life is without suffering. But it seems that my friend has been through so much already. Why another one Lord? Why Gretchen again?

I know Gretch that you are strong. You are a strong mom. God is with you through this. Through my trials you've been my best friend, my voice of reason, my face of compassion, my fashion police, my political forum, and the companion in my storms. I know you are these things to lots of us because you are a caregiver by nature. And we are here with you Juzee.

This posting is not for blog visitors. But rather, this post is for you Gretch. Friend to friend, sister to sister, mother to mother,

Happy Mother's Day to a mom that I admire.

Stem Cell Drive

Hi all...this just in from Jon & Gretchen:

Gretchen and Jon would like everybody to know about a Stem Cell Drive to be held next week at Children’s Memorial Hospital, Tues and Wed, May 13-14, from 9:30am to 3pm. The Stem Cell Drive is an important cause because children (and adults) who are like Griffin can benefit from it. In fact, it can be a life-saving gift for those in need. On any given day, 6,000 patients search the National Marrow Donor Program registry for a marrow donor. They are hoping to find a volunteer donor, someone who is willing to help them. Donors with diverse racial or ethnic backgrounds are especially needed.

Fortunately, Griffin’s oncologists do NOT feel that he would need a bone marrow transplant at this time, but it’s sometimes the only option for those whose cancers relapse despite standard treatments.

Joining at the hospital is free. Parking is $4. The drive will be held in the Doctor’s Dining Room inside the cafeteria (on the lower level of the main hospital).

People can also join by going to the National Marrow Donor Program web site: www.marrow.org. Click “Join” under “Become a donor.” Joining is free for the first 10,000 people who join online between May 5 and 19.

Here’s the address to Children’s Memorial’s website for the donor drive: www.childrensmemorial.org/depts/stemcell/bone-marrow-donation.aspx

The coordinator at Children’s Memorial Hospital is Eileen Smyth, who also happens to be one of Gretchen’s friends from Good Counsel High School. For anyone who would like more information, feel free to contact Eileen at 312.802.1152 or esmyth@childrensmemorial.org

GRIFFIN IS IN REMISSION!

All,

Our prayer is working! Jon and Gretch received a call from Griffin's doctor this morning who reported that Griffin was officially in remission!

What does this mean?
It means that after examination of yesterday's bone marrow, less than 5% of the cancer remains. This confirms that Griffin is an early and a positive responder to the treatment. This puts him in a higher likelihood of 100% cure of leukemia.

PRAISE GOD! OUR PRAYER IS WORKING! ALL THE GLORY TO GOD!

What are the next steps?
Griffin will continue the chemo treatments that will continue for the next three years. The doctor cautioned that they need to be vigilant about killing the cancer or he might relapse, but this is great, great news!

12 hour sneak peek

7:00AM Griffin has to get up and ready. Today is his first outpatient follow up visit to the doctor at the Children's Memorial Hospital. There is no breakfast in the morning because he has to refrain from eating. His doctors orders are to be NPO. This stands for "Nil Per Os" in Latin, translated "nothing by mouth". Since Griffin's procedure is in the morning he is not allowed anything to eat or drink, due to the fact that he has a higher chance of aspirating during the procedure. This particular morning he does take his crushed decadron medication mixed with a little of liquid. He has to take this through a syringe that his mom has to administer. And believe me he is not agreeable for anything this morning.

7:30Am Griffin is strapped into his car seat for the 15 mile ride to Children's Memorial Hospital. The ride is slow and arduous due to the fact that the Edens Expressway is under construction and only 2 out of 3 lanes are open. Not to mention the fact that rush hour traffic is in full throttle.

8:37AM Griffin and Gretchen take the elevator to the 4Th floor clinic/same day hospital waiting area. Griffin is seven minutes late for his appointment with the Nurse Practitioner Maureen who will take a short history and physical exam. Gretchen and Griffin wait with other parents and their kids in the cramped waiting room. It is here that Griffin is given a packet of coloring pages and a small box of crayons to keep him occupied.

During this part of the day Maureen has to go over the procedures for the day with Gretchen and evaluate the progress of Griffin's health since he has been at home. At this time his vital signs, height, and weight are recorded. After all is said and done Griffin gets to pick a toy out of the 'treasure' box.

9:15AM Griffin and Gretchen are back in the waiting room.

9:20AM Griffin and Gretchen are called into another room off of the waiting area where the blood tests are drawn from the PICC line that resides in Griffin's right arm. At this time a second nurse is also on hand to help assist with the blood draw and keep Griffin occupied while he screams and cries to his mommy(who is holding Griffin) to get him away and out from this room. Additional teaching and information is exchanged between the nurse and Gretchen regarding the maintenance of the PICC line. Griffin receives a sticker. After the blood is drawn, Griffin and Gretchen are back in the waiting room. There are more families present so space is tight, but a empty seats are found side-by-side.

9:30AM Griffin and Gretchen are led down to the 2nd floor procedure suite. Maureen (NP) was able to squeeze Griffin in for a 10:30AM appointment. Original procedure time was 1PM. It is here that Griffin and Gretchen meet the nurses and anesthesiologists who will be present during the procedure and also in the recovery room. More questions are asked about Griffin's history, more vital signs are taken, and Griffin is suppose to get into a gown (but he does not want to). Griffin receives a nebulizing treatment prior to the procedure and a calming medication of versed is given. The versed medication is suppose to help Griffin relax due to the fact that every change in his environment is a disruption in his personal space. (For example, Griffin does not want to change in a hospital gown. He does not want to get out of the stroller. He does not want the television at a level that is closer for him to see. He does not want to take off his socks. He does not want mommy to sit down. He dose not want the doctors or nurses to touch him. He does not want to be at the hospital.) Was this medication for Griffin? or for the benefit of the medical staff? I would say both considering what needs to be done is still too much for Griffin to understand. The medical staff do not want to cause more stress for the patient and yet have to do their job.



10:25AM Griffin is cranky and tired and refuses to watch the personal television set. Griffin miraculously follows his nurse to the procedure room with out a tantrum. (Is the versed kicking in?) Keep in mind this is the only time in the day that Griffin has not cried when asked to do something. Up until this time Griffin has not been agreeable and uncooperative. (C'mon he is 29 months old people, how do you think he should act?). Gretchen waits for Griffin in the patient lounge waiting area down the hall from the procedure/operating room.

11:25AM Gretchen is called back into the recovery room area where Griffin is found very uncooperative. (Let's recap. Griffin has not eaten since dinner. He has had a sip of juice with his medication, woken up from his slumber in the early morning. He arrives at the hospital where his arms legs and chest have been poked, prodded, and assessed. He wakes in a strange room full of strangers after a procedure that causes pain to his right hip and back. He is not able to leave the recovery area for a short time because the nurse has to fully assess his progress after the procedure). By the way, two procedures were performed at the same time, a bone marrow biopsy and spinal tap. No blood transfusion is needed at this time(that would have taken 3-4 hours).

12PM Gretchen and Griffin are allowed to leave the recovery area and go home but not before having to proceed to the garage in the rain to get back in the car.

12:45PM Griffin and Gretchen are back at home and getting ready for lunch. Surprisingly, Griffin eats like he has never seen food.

2PM Griffin pads down to nap for a couple of hours.

4:30Pm Griffin and Gretchen eat dinner.

6PM Griffin takes more medications. And reads a whole basketful of books.

7PM Griffin gets ready for bed.

Throughout the day Griffin's mood is up and then down, which can be caused from the decadron. Griffin is exhibiting high need behaviors one minute then agreeable and sweet-as-pie the next. Almost every answer to questions is "NO" and then sometimes he will be agreeable and does what is asked. Griffin may not communicate with words all the time and he does not fully understand why he has to do some things. Continue to pray for Griffin and his family. The whole family is now under one roof. Getting along with the schedule? Yes in some sorts. Please continue to leave your comments for Gretchen and Jon.

Scheduled tests

Griffin was able to see his brothers and sister this morning. He was fighting his big brother Everest like nothing has ever happened. Then he walked his big brother to the bus stop. Griffin walks back and forth from TV to TV to watch Blues Clues and Dora and Diego. The home health nurse came by and taught Gretchen how to flush the PICC line and how to record vital signs. Griffin has a few things scheduled for tomorrow. He is on the outpatient schedule for a bone marrow biopsy and spinal tap where the doctors will administer chemotherapy at the same time. The planned time is 11:00AM. In addition blood draws will be obtained and it will be determined if a another blood transfusion will be needed. Please pray for Griffin's fast return as Gretchen will be in the recovery waiting room.

First night at home

This will be quick but a few things Gretchen wanted me to mention were last night was not what was expected. When the family came home Griffin was tucked into bed despite the cries that he wanted to go back to the hospital and continue wearing a hospital gown. The supplemental freezer in the basement was inadvertently left open and all of the frozen supplies had to be thrown out. A sack of potatoes was left on top of a new opened bag of rice (25lb.), and the potatoes began to spoil, Jon did not want to risk the chance of mold entering the rice, everything was tossed. The computer crashed last night so they were unable to access the internet. And then Griffin woke up crying at 5AM. He slept through the 3AM morphine dose. Tomorrow will be a busy day for Griffin. He has a bone biopsy, spinal tap and blood draws scheduled. More updates to come later.

Dicharge postponed

Griffin's discharge was postponed yesterday because the home health care agency was unable to provide materials and meds needed at the house. The plan is for the home health care agency to drop off all materials at 4PM, the family should be discharged by 12PM. Griffin is currently in the process of a barium swallow study. Griffin was also moved last night into a shared room. He had to give up his private bed. More updates later.

Update 6:20PM
Griffin and parents finally made it home. Griffin became nauseated and vomitted in the car. Looking forward to a restful night for all. More info to come Gretchen could not talk because she was cleaning Griffin.

Going home!

Who would not want to be in the comfort and safety of their own home? Being able to play with their toys and counting on predictable outcomes is sought out by the young child. When changes occur in a young child's life it can be hard to transition. Daily schedules and consistent care are key in a child's development. The young child will be able to explore and learn in a setting that is safe and secure.
Okay, so enough with the Child Psych 101, but with the planning of Griffin's bon voyage from 2300 Children's Plaza it is with the hope that Griffin will be able to grow and thrive as he has been before his diagnosis of Leukemia. Many things have changed and daily schedules will be different. Monday tot class with Miss Chris and Miss Amanda, Tuesday play group therapy with Cathy and Corey, Thursday Kindermusik with Miss Caroline, and Nutrition every other Friday is on hold for Griffin. Gretchen and Jon have taken measures in planning the activities of the week and deciding the logistics of household arrangements. It has been comfirmed that Griffin will most likely go home today in the early evening. Part of this plan consists of administering IV pain medication scheduled, oral medication twice daily, and assisting with all activities of daily life (feeding, changing, etc.). Griffin's daily schedule has changed for sure. Gretchen and Jon are learning to incorporate these different activities in Griffin's schedule. The schedule of events are not the same but the goal of creating an atmosphere conducive to Griffin's wellness and development have remained. Knowing Gretchen and Jon and the people that stand firm to help support this family, it will be possible. It may not be easy but Gretchen and Jon will make every effort possible to be sure it is done. Please continue to pray for Griffin and his family.

1 more day at the hospital...

The latest milestone is to get Griffin home! Everyone is hoping for a discharge tomorrow, Sunday May 3rd, or the day after at the latest.

What is keeping him there? Pain management. The doctors still have Griffey on a morphine IV. And of course he's receiving more chemotherapy.

Of the usual side effects - blood clots, brain swelling, nausea - Griffey has only experienced nausea. And Jon was quick to point out, "No Telly Savales here either." A positive note is that he is starting to get his appetite back and eating a little more.

The Maksen send much love to everyone for the support and the phone calls!

Children and medications- Do they mix?

Gretchen and Jon continue the planning of Griffin's discharge. They are rearranging furniture at home and taking on an overhaul cleaning of the house. Griffin may possibly go home on Saturday. As of the evening of May 1 (Thursday) Griffin's condition is stable after the placement of his PICC line. Griffin's course of medication include intravenous and oral meds.
Apart from the lines that poke from under his gown inlcuding the IV tubing with fluids, he has a heart monitor attached with sticky pads, a pulse oximetry monitor attached to his big toe (wrapped kind of like a band-aid), and a blood pressure cuff attached to his other lower extremity. Given this situation and probably tired from the day's events and the progressive course of chemotherapy it seemed that all Griffin wanted to do was sleep and not be bothered. But does sleep uninterrupted ever happen when you are a patient in the hospital? In Griffin's case, no. It was time for Griffin to take his scheduled medications and record vital signs. After being turned a couple ways, to access certain parts of his body, Griffin was awake, and he was not happy. When young kids communicate their discomfort, their cry can become so forceful encompassing the whole body to respond with the voice. This thereby did not help in recording his blood pressure. Not to mention his body posturing also indicated to leave him alone. With arms flailing about and verbal communication reaching ear piercing decibels, these are red flags to stop. But would a 29 month old boy have the capacity to understand what the course of action is in this case? You tell me. Did you ever have to give antibiotics or fever reducing medications to your child? Are their any children out there that like the taste of warm, bitter, and gooey looking medications? So what is the plan in this case? Not an easy solution, but none the less a course of action that would include making him swallow all his decadron, allopurinol, prevacid, and tylenol (did I miss anything?). Griffin may have been a bit more agreeable if he was more alert and awake. In the end of it all most of his medications were taken with a little amount being spit out. With a quick diaper and linen change Griffin was back to his slumber probably for another 3-4 hours until the next scheduled task. Check back later for more, and continue to pray for Griffin and his family. Also pray for the nurses who with hearts that break with every cry know that all of this is in the best interest for Griffin.

Update 12:10PM (phone conversation with Jon and Gretchen)

I just got off the phone with Jon and Gretchen and they are waiting for Griffin to get his PICC line placed in Interventional Radiology. It was revealed to Jon by the anesthesiologist that Griffin had complications with oxygen saturation during the first two procedures (Bone marrow biopsies). So now the doctors will be using another type of drug for anesthesia called Ketamine primarily used for the induction and maintenance of general anesthesia. Gretchen asked to continue to pray for Griffin.

Update on Griffin 3:21PM
Griffin received his PICC line which was placed into the right arm. The procedure was under general anesthesia without any complications. He has taken another dose of oral chemotherapy called decadron. Jon and Gretchen have met with some outpatient oncology team to start planning the outpatient based chemotherapy. Griffin is comfortable and sleeping for now.