Wednesday, April 30, 2008

Update as of 11:55PM (written for Jon and Gretchen)

Hi everyone it's me Giselle again, here is a message from Jon and Gretchen. I am typing this up verbatim and so here goes. "We are overwhelmed with all the events that have been happening. The administration of different medications, obtaining blood samples, and the task of replacing the intravenous line has been very difficult to watch. Vincristine, allopurinol, zantac, miripenam, dexamethasone, and miralax are the names of some of the medications. Today there were 6 different times that he was poked and prodded for blood and/or to replace an IV. Each time laboratory samples are needed 3 people have to hold him down from moving. Now the doctors are warning that any secondary infection can be detrimental because Griffin's immune system is suppressed or weakened from the chemotherapy." Gretchen continues to say, "So we are happy for all the support from family and friends, but for right now we are putting a stop to all the visitors to the hospital."

Tomorrow's plan is to have a PICC (Peripherally Inserted Central Catheter) line placed to allow an access for easier administration of medications, obtain blood draws, and to decrease discomfort that Griffin endures with each and every needle stick. The downside to the PICC line is the high risk for infection. In addition, during the induction phase of the chemotherapy, Griffin is at higher risk of developing infections which can be life-threatening.

Jon and Gretchen are now in the planning process to bring Griffin home and are paining to make the decision to keep Griffin quarantined. This is a most probable possibility since Griffin's brothers and sister (Everest, Hudson and Kailey) all have the sniffles. Jon and Gretchen are looking forward to when the whole family can be together along with extended family and friends (Jon and Gretchen and social gatherings; they go hand-in-hand:) but most likely when Griffin's blood counts have improved.

While typing this entry I see the pain and heartache that Jon and Gretchen are experiencing as they make these decisions. They do not want to offend anyone but feel that this is the best decision for Griffin.

Gretchen also requested that I post a special present that was left for Griffin from his Kuya Everest and Nicholas (Everest's classmate). Gretchen and Jon found this on their dining room table. They have not been able to spend as much quality time with Everest, Hudson, and Kailey while Griffin has been in the hospital. Jon and Gretchen have been at Griffin's bedside since day one. The care of Everest, Hudson and Kailey has been placed in the hands of the Grandparents (Marita, Aida, and John). So when Jon and Gretchen do go home to quickly shower, change clothes, and regroup their thoughts the kids are at school during the day or sleeping during the late night hours. Finding this art work waiting for them makes them want to get back to their home and family as soon as possible. That is all for now, more to come tomorrow, so check back later and leave your comments for Jon and Gretchen. Please continue to pray for Griffin and his family. Pray that God will provide them with the wisdom to make the right decisions and the strength to endure the path that has been laid out.

First Chemo Treatment Administered Successfully

Jon just updated that the doctors were able to get around the IV problem and administered the first chemotherapy treatment successfully. Tonight there is further oral chemotherapy scheduled

Chemotherapy Postponed

The doctors could not find a vein for them to put a line in. They looked all over. They will have to do a special procedure to get a line in which they will do tomorrow. Chemotherapy is postponed until tomorrow.

Confirmed that Griffin has PreB ALL

This is the first good news since this whole heart breaking situation has started: doctors confirm that Griffin does have Pre-B ALL-- this is the 80% highly curable Leukemia.


Thank you Lord...














Last night Griffin had a blood transfusion to get his hemoglobin level is up. This was to prepare him for this chemotherapy.

He will start chemotherapy this morning which is mostly an induction phase. The chemotherapy will be administered through Griffin's IV and through pills. These are very toxic chemicals that will kill the tumors and the cancer in his bone marrow. The doctor's tell them that Griffin's only side pain for this induction chemo treatment should be jaw pain.









Assuming Griffin responds well to the chemotherapy, Jon, Gretch and Griffy will go home this Friday, May 2. Everest, Hudsy and Kai-Kai miss Mommy, Daddy, and Griffy dearly. Gretch and Jon have started planning in preparation of taking care of Griffin over the next six months of chemotherapy.

Update from Gretchen as of 12pm

Hi all it's me Giselle and I talked with Jon and Gretch this afternoon, per Jon, "Our night was great and went well, pretty quiet night switching between bed and chair."
Gretch says "I got to sleep on the bed...Griffin slept with the morphine and then woke up at 8am. Gretchen also continued telling me about the morning, "Today he sat on my lap in the blue chair and ate 1/4 of the blueberry muffin like an apple(prior to this Griffin refused to eat and only with encouragement would he eat a bite or two of buttered noodles or soft cubed carrots).
From the playroom Jon has borrowed a tricycle and Griffin is eyeing it with delight. His pain is still too much to move especially with diaper changes. Gretchen also stated he will eventually walk after chemotherapy starts.
These pictures are from last night, but Gretchen has sent pictures of Griffin from today with big smiles(check back later when Jen posts these pictures). While talking with Gretchen, Griffin had the nurse working over him to prepare another IV line, the nurse was preparing the different sites of his arms with an emla cream(to help numb these areas that she will be accessing with a needle.) His chemotherapy will start today.
Continue to pray for Griffin and the family. Gretchen and Jon continue to check the site and are happy to hear from everyone.

Tuesday, April 29, 2008

Second Bone Marrow Biopsy Shows Positive Results

News on the Diagnosis:
The doctors completed Griffin's second bone marrow biopsy and though the official analysis is not yet in, the doctor's said from what the see so far, they are hopeful that Griffin does have Pre-B ALL which is the "better" Leukemia to have. The treatment for this will be about six months of intense chemotherapy which will have lots of bad effects among which are:

-loss of hair on head, eyebrows, eyelashes
-brain bleeds
-swollen face
-sickness

The good news is that this Leukemia is *HIGHLY SURVIVABLE*.
(taken from http://www.bio-medicine.org/medicine-news/Looking-Towards-More-Effective--Leukemia-Treatment--2861-1/)

"Eighty percent of the time childhood acute lymphoblastic leukemia is curable with chemotherapy. The bad news is doctors are not sure why it doesn’t work for the other 20 percent of patients. Now, new research finds it could be because of a small number of genes that are resistant to drugs used to treat the disease."

News on Griffin:
Griffin woke up with sores on his lips and in his mouth. This could be related to the small dose of chemotherapy that the doctors gave him last night. He is recovering from the second bone marrow biopsy operation. Mommy and Griffin watched Blues Clues, Griffin's favorite and he was responding to Mommy's questions:

Who is that?
Notebook

What is that?
Clue


Questions from Family and Friends
Here are Gretchen's answers to questions from family and friends...

How long will you be in the hospital?
We will definitely be here until the end of the week, May 2. After today's analysis of the bone marrow, we will know more about the chemotherapy strategy. The results could dictate that we go back and forth from home to do the treatments. Or this could dictate that we stay here for 5 days of intense therapy and can leave and stay at home for some interval and return and keep doing these rounds. We will find out this evening.

Can we send you flowers?
I believe the hospital is not allowing flowers at this time.

Is there anything we can do?
At this point we cannot request help until we know what our situation will be like. I love to hear the comments. It lifts me up. Very touching.

Are you going to test the other kids for Leukemia?
We are going to get our arms around Griffin's Leukemia then we will circle back to the others.

Monday, April 28, 2008

First Test Results are Inconclusive

Just spoke to Gretchen on the phone. The bone marrow tests were inconclusive as to what type of Leukemia Griffin has. They will do another bone marrow extraction tomorrow and perform another set of tests. The doctors are leaning towards ALL PreB but they will hold off on the chemotherapy until tomorrow evening.

Griffin is more comfortable because they are now providing intervals of morphine doses. He was even able to enjoy a lollipop.

Gretchen reports that the kids have been divided among the grandparents. It is a big task to take on three kids while the parents are attending to Griffin. Hudson is with Lola Marita. Everest and Kai Kai are with Poppy and Grandma Maks.

Giselle is on her way to the hospital now to provide relief and support.

Please make sure we send words of encouragement and support to Jon, Gretch, and Griffin by adding comments.

Griffin Goes to the Hospital

Friends and Family,

It has been a devastating week for the Maks Family.

Two days ago, Griffen, the oldest of the Maks Triplets visited his pediatrician because his hip was so painful he could not walk. His pediatrician must have suspected something from the blood tests and immediately sent them to Children's Memorial Hospital. Gretchen thought she was going there to see a Pediatric Orthopedist and that perhaps Griffen had a small fracture on his hip from falling. However, yesterday morning Jon and Gretchen found out that Griffen has Leukemia.

It has been a horrible 48 hours. Griffen cannot sleep and is in so much pain. At 4am this morning to ease his pain the doctors gave him morphine. There is surgery scheduled for this morning for doctor's to extract bone marrow from Griffen's hip bone. The doctor informed us that he will be in even more pain from this procedure. The bone marrow is necessary for testing the type of Leukemia. Chemotherapy is scheduled to begin tonight, once the tests have identified the type of Griffen's Luekemia.



There are three types of Children's Leukemia:(http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_is_childhood_leukemia_24.asp)


* Acute lymphocytic leukemia (ALL, also called acute lymphoblastic leukemia) accounts for about 3 out of 4 cases of childhood leukemia. This leukemia starts from the lymphoid cells in the bone marrow.
* Acute myelogenous leukemia (AML, also called acute myeloid leukemia) accounts for most of the remaining cases. This leukemia starts from the cells that form white blood cells (other than lymphocytes), red blood cells, or platelets.
* Hybrid ( mixed lineage leukemias) are rare. The cells have features of both ALL and AML. They are generally treated like ALL and respond to treatment like ALL.


Many people are asking me how they can help. Can we cook for them? Can we help babysit the other kids? Do they need money? For now, Gretch and Jon are trying to assess the situation. Some Obvious emotions are worry, devastation, fear, and sadness. I think cards and flowers would be awesome. You can call Children's Memorial but please understand if they are not able to talk for too long since they are trying to ease Griffen from his discomfort.

I think the most important thing is to keep Griffen in our prayers.
It says in Exodus 15:26: "...for I am the Lord that healeth thee"

I will be giving a report as often as I can to keep friends and family informed.

Jenny, on behalf of my 2nd family...the Maks Family



PS.

Putting this on the post since its not so obvious in the comment:

All I forgot to mention that these photos are compliments of Giselle Santos. Thanks Giselle for taking the pictures! In the hospital room, Giselle just snaps away for our photo diary of Griffy's victory over this cancer!