Saturday, February 28, 2009

Test Complete !

Another lovely day at the hospital. All the nurses think Lukas is the most easy-going patient they have ever seen. We are grateful for the Broviac for tests like these (no pokes!) so Luke has no reason to be nervous at all. He took a little nap and woke up wanting a Popsicle. The sleepy medicine had no side effects, so after the test we went to visit Uncle Greg at Whole Foods. I told Luke he could pick whatever he wanted to eat. He choose a big slice of cheese pizza, orange juice and a peanut butter cookie.
The type of tumor Lukas has is quite rare and varies greatly from case to case. The Oncologist explained the need for all these tests as being like the pieces of a puzzle. Before they can give us a comprehensive treatment plan they need every single puzzle piece in place. The Lord has been so patient with us, now we must wait on the Lord. I keep thinking of all the ways he has made this ordeal easier on us. The kids are home schooled and finished many subjects early. Our home school CT even has a son who had a neuroblastoma 13years ago, she is fully understanding and encouraging us with both her experience and sharing scripture with us. Mike is self employed and able to take the time to be at the hospital. Our family is all so close to us and available to help us sooo much. The many friends and family in Christ who are lifting up Lukas in prayer.... the list goes on. Luke's next test will be Wednesday the 4th of March.

Thursday, February 26, 2009

Bone Scan Tomorrow

Today Lukas rode his bike and enjoyed the sunshine (we all did) ! We got our first shipment of Broviac supplies and changed his bandages and caps. It went much better than the first dressing change at the hospital. This time was tear free! yay! The anesthesiologist just called to confirm and give eating instructions for Luke's bone scan tomorrow. We are to arrive at Sutter Memorial at 10:30am for his injection, then we will wait two hours. Luke will sleep through the one hour scan while Mom and Dad will be praying for perfectly clean bones !

Saturday, February 21, 2009

Home Care 101

Kids are amazing ! We took apart the bunk beds and got Luke a step stool, climbing into bed proved to be a bit painful, but other than that he's been feeling pretty good. We are waiting to hear from the Oncologist office. They have a few more tests including a "bone scan" they need to do. They need to give Lukas the "sleepy medicine" again for that. At least they can do that through his broviac so they don't have to poke him! The nurses said we can expect to get a big binder detailing his treatment plan. We have a lot to learn.

Every day his broviac lines need to be "flushed", which means, injected with an anti-coagulant called heparin(to keep the lines from getting blood clots) Today I flushed his broviac lines all by myself! A little scary, but I think it will get easier after a few days.

Friday, February 20, 2009

Luke's Home!

Still waiting

This Friday morning still finds us waiting. It seems to be the main theme of this experience! We are still hoping to come home today, it just depends on Luke's condition. Luke was up and around yesterday, the first time out of bed was a little hard for him. He was also a little concerned when while going "#2" , the reality of a tube sticking out of his chest struck him and he wanted it out. The evening proved to be better for him and he was up in the playroom watching the kissing fish and played a game of Battle Ship. Dad lost :( Joe, Grace, & Peter have been spending the week with Grandma Suzie. I am sure they are having the best week of anyone! So we will continue to post updates, and thank you all for continuing to hold up our family in prayer.

Thursday, February 19, 2009

Thursday Morning

No news at this hour. Today we are supposed to learn how to use the broviac, change the caps and flush the lines. There is a planned visit by Grandma Kay and Uncle Vernon. We are most likely going to be released before the weekend, yay! Due to the length of time it takes to get the pathology reports to come back from all over the country, will will not know the protocol of treatment until next week sometime. So until then the hospital said we might as well be at home. (of course. It doesn't take a doctor to know that!)

Wednesday, February 18, 2009

Ganglioneuroblastoma, say that ten times fast.

Today we had the biopsy and the surgery went well. Luke is recovering and will hopefully be home sometime within the week. Not so soon for the pathology reports. Some in-house, some sent out and some from the national cancer institute and data base. We were told probably early next week. We were told he has a ganglioneuroblastoma type tumor. Not the best and not the worst. Basically still a mystery. From what I’ve read, it affects about 5 cases out of 1,000,000 children. I;ve pasted some discriptions of the tumor here, kind of vague on treatment due to needing the pathology reports back. Chemotherapy it turns out is very specialized and the protocol to be followed needs to be based on the exact cell type that the tumor turns out to be. Luke also had a broviac inserted today, so no more “pokes”
Again, thanks for your prayers for this strong little boy.

Ganglioneuromas and ganglioneuroblastomas are tumors of the sympathetic nervous system that originate from neural crest sympathogonia, which are completely undifferentiated cells of the sympathetic nervous system. Along with neuroblastomas, ganglioneuromas and ganglioneuroblastomas are collectively known as neuroblastic or neurogenic tumors.1
Most frequently occurring in the abdomen, these tumors can grow wherever sympathetic nervous tissue is found. Common locations for ganglioneuromas and ganglioneuroblastomas include the adrenal gland, paraspinal retroperitoneum (sympathetic ganglia), posterior mediastinum, head, and neck; it is uncommon to find them in the urinary bladder, bowel wall, abdominal wall, and gallbladder.

Ganglioneuroblastomas (Luke’s diagnosis at this point)
Ganglioneuroblastomas are a mix of malignant neuroblastoma and benign ganglioneuroma tissues; they are sometimes called transitional tumors. These lesions also originate from sympathetic cells. Histologically, they are considered malignant because they contain primitive neuroblasts along with mature ganglion cells.
Ganglioneuroblastomas have a propensity for secreting catecholamines; approximately 90-95% actively secrete vanillylmandelic acid (VMA) and homovanillic acid (HVA). Catecholamine toxicity rarely results. HVA tends to be secreted by more mature and differentiated tumors, whereas VMA is usually a product of less differentiated tumors. In fact, the ratio of VMA to HVA secreted can be used as a prognostic factor to assess tumor maturity. In addition, more mature tumors may contain vasoactive intestinal peptide (VIP)–producing ganglion cells. Elevated levels of VIP can produce diarrhea, hypokalemia, and acidosis.
Despite these possible comorbidities, the prognosis for patients with ganglioneuroblastomas is relatively good. These tumors may spontaneously regress or mature. Maturation occurs at an unknown rate that eventually stops at the ganglioneuroma stage. In fact, all ganglioneuromas are thought to have once been, at an earlier stage of their development, ganglioneuroblastomas or neuroblastomas. Regression occurs in 1-2% of tumors; the cause of ganglioneuroblastoma regression is unknown.
Surrounded by Mom,Dad,grandpa Mike,Grandma Suzie,Grandma Kay,and Auntie Kim, Luke just left for the OR. Hopefully we will have some news in three or four hours.

Tuesday, February 17, 2009

Checkin' in

We have made it to the hospital and have started getting settled in. Luke is watching Stuart Little, waiting to have an IV put in at any minute. :( Surgery still schedueled for 7:30.

News, not much,but better than whats on CNN.

Off to the hospital tonight to check in for the scheduled seven thirty AM surgery. Should be nothing going on really tonight except checking into the room and getting an IV started. We should have a lot more news by afternoon tomorrow. We are as anxious for some news as you all, and will continue posting updates as they come in. Thank you everyone for yours prayers for Luke. We are truly blessed by God.

Saturday, February 14, 2009

First update

This has all happened very fast, two days, starting with a routine five year old check up. Erica took Luke to the doctor for his five year old kindergarten check up on Thursday, where she asked the doctor about his tummy because he always seems gassy. After feeling his stomach, said she wanted us to go downstairs for an X-Ray to see if anything was wrong. We did, and after the radiologist read the X-Ray he sent us for a CT scan which lead us to a trip to Sutter Memorial Hospital to be admitted. Originally the doctors thought it was a Wilms' tumor, a cancerous tumor of the kidneys, until they did further tests. After another CT Scan with contrast injected into Luke, they now know it is not in his kidney, but they are baffled as to what kind of tumor it is or where its coming from. All his organs appear to be normal at this time. It is very large, filling about a quarter of his right abdominal cavity. It starts under his lung and goes down to his pelvis. Organs that should occupy this space have been pushed over to his left side.
We were allowed to come home last night. We will be admitted back in on Tuesday (17 February), afternoon/eve. to prepare for a surgical tissue sampling on Wed. morning. He has been wonderful through all the tests (except the I.V. was really hard). If the mass is determined to be cancerous at the time of operation, a port for medication injections will be inserted during the surgery on Wednesday.
We have never been though any thing like this in our lives and are relying on God to take care of his son. We know it is all in his hands. Our God is an AWESOME God. We appreciate the out pouring of people wanting to help out our family in some capacity. We are especially blessed to have close family that has been able to take care of a lot for us already. All that we can ask of everyone at this time of many questions & few details is to devote yourselves to prayer as God, not us has commanded. Colossians 4:2, 1Thessalonians 5:16 James5:13.
Thank you all and we will continue to update this blog regularly.
-Mike & Erica