matty's Journey with Medulloblastoma

Finally found a Dr. who is willing to quarterback the radiation treatment with Proton Radio in Jax, FL. He was evaluated and measured. Then sent back to So Fla for Chemo.

Initial consult for Xray was yesterday. Oncologist has rarely seen this type in an adult. Recommended Proton Therapy. Initial consult with them is Thursday.

Lumbar Puncture revealed cancer is in spinal fluid.

Shunt Failed after 2 days. In and out of lucidity, behavioral changes.

Shunt two is in... seems to be working for now. MRI scheduled for today maybe hospital release.

Yesterday, patient complained of increased neuropathy on his left side. ER visit. CT came back un-remarkable, blood tests fine - MRI showing the tumor is back and inoperable.

Did 4 rounds this week. They rushed day one so it was just IV. Day two tried to insert a Picc line - no luck. Day three able to get the Picc in, so it went a bit faster. Day four. Meds starting to really kick in.

The report from last weekend's tests have now been read by the original surgeon down at Miami's Jackson Hospital. He concurs that the tumor has indeed returned to the original resection area and a second has occurred near the pituitary and there are also numerous seeds throughout.

This is just the pervasive mode. I would estimate in bed for 22 hour per day.

Rx for Zoloft - one week ago. Sees to be helping.

Apparently sweat-glad infection is pretty common. Rx for a antibiotic seems to be doing the trick.

It's been about two weeks since the 4 runds of chemo. At first he was handling very well. About a week after it began, nausea, headaches, weakness, and all the rest ensued. Hair loss to head and face and just general fatigue has set in.

Dr. Rx'd Zoloft for depression. Is definitely working.

Did another 4 sessions last week. Really hitting hard again now. Pretty much the same side effects as before.

Two weeks ago the patient asked to die - this was at the low point after 4 straight days of chemo. Then he asked for someone else to make his decisions (on whether to continue treatment) for him. We said no. So long as he is of sound mind, he needs to make them. Recent findings and facts were transferred to his radiation doctor (5 hours away). The doctor wants him to start on proton radiation ASAP. Tomorrow he makes the drive to live in Jacksonville for the next 7 weeks. The radiation doctor has also said that he will probably be doing chemo and radiation in tandem for the next number of weeks.

Yeah... those seed tumors that they found. Well, the seeds are dime sized.

Proton radiation began on 4/29. Other than general fatigue it's too early to tell what else may be going on.

Was hospitalized Friday to Sunday and radiation had to be suspended Friday, Monday, and Tuesday. Wed. blood work came back better and radiation was continued.

Proton Radiation is done with. The last CT showed the seeds are gone and the primary tumors were shrinking. That is at least some good news. The patient is back home recuperating for three weeks or so until the chemo sessions begin again. His overall physical appearance and capabilities are no better off then when he left 7 weeks ago. He still has balance issues, double vision (appt. at Bascon Palmer Eye Institute today), and little control over the shake in his hands. Walking is still with a walker and spends about 22 hours a day in bed. His drive to get any better physically is at a low.

The original port was removed during the 3 week rest between Proton Radiation and the next rounds of chemo. The new one was just put back in as chemo is resuming.

New pre-chemo resumption MRI taken. Show no signs of seed tumors, no secondary tumor; primary is half the size since regrowth. Appetite is still way low - fluids had to be administered via IV for the past two weeks.

Appetite is still way down. Still in bed about 23 hours a day. Still having trouble focusing (double vision) hearing loss on left still present. Balance issues requiring walker present. Chemo 4 times a week per month resumes this week. Still taking Zoloft.

Cell count crashed last week. Also low potassium and low magnesium plus fever. Admitted to hospital.

Complete transfusion during hospital stay of three days.

Patient is eating less than 1000 calories a day. Dr's say unless he steps it up they will consider a feeding tube.

It seems about a week and a half after chemo his white cells just crash and he gets a mild fever. This time, they did not admit him to the hospital - they did an office visit transfusion.

So MRIs were taken and compared to those of about two and half months ago. Seeds are still gone. Primary is the same size as it was. So that means stable. Not sure that that is so good. Also, showing a rather large (6cm) legion in his left lung. That is probably very bad - CT scan tomorrow.

The last of the chemo has been administered.

Shunt needs to be replaced. Looks like that will be happening in the next week or two.

Loss of balance over the weekend, let to an ER visit. CT scan and MRI have confirmed the cancer has spread.

Patient was scheduled to have a lumbar puncture to confirm what three Dr's and a University Hospital have already agreed upon. The cancer is back. Lumbar puncture, transfusion and shunt replacement have all been cancelled.

Late last night the patient was transferred back to his house and his parents (along with hospice) will help him through his last bit of his journey.

Can no longer urinate on his own. Catheter has been used for a week now.

A sort of confusion/dementia has set in - there are prolonged moments of lucidity. But his communication motor skills are poor. Thick tongue and tight jam and slurred speech make it difficult.

All meds have been changed to liquid form. Food is limited to a few teaspoons of apple sauce a day.

O2 is being administered as necessary.

Patient no longer has feeling or mobility from the waist down.

Slurred Speech has set in. Frustration on the patient's part and the family. Inability to communicate wants and needs.

Food intake has stopped as of a few days ago. Water is minimal. Perhaps 4 ounces per day at this point.

Agitation, combativeness and all around restlessness has become the norm when the patient is awake. Meds are being administered to counteract as much as possible. Morphine, Haloperidol and Atavan are being used. The end is near, but not near enough for all involved at this point. Everyone is suffering. Hospice doctor says that the cancer just has to take him at this point - the problem is that his 29 year old heart and lungs are not going to give up the fight that easily. So difficult to witness.

Shaun 1984 - 2013 11 months from diagnosis to dead. I have tried to keep witness to this timeline as a testament to my brother in law, but also as a resource to any who follows that is also diagnosed with this type of cancer at this age and in this way. Take care of yourselves and anyone else following or reading this - hold your loved ones close and squeeze realy hard. Make it last as long as you can.

I believe that this was left over effects from the last round of chemo, last week, and not the beginning of radiation.