Matthew's Page

Matthew's doing well. I'm going to send an update soon. They did do the bone marrow harvest on Monday ...the sedation was kind of rough for him...he woke up kind of grumpy and stayed that way for a few hours. They did get all they needed in one day though, so that was good. His hemoglobin counts dropped, so we had to go in for a blood transfusion yesterday. His numbers have really taken a hit with this round of chemo. He needed platelets 3 times, blood 1 time......unfortunately, this might be pretty typical. We get readmitted for chemo on Friday . We did find out something new yesterday. While he's in the hospital for the 4-6 weeks for the bone marrow transplant he will pretty much be in isolation. Rodney and I will be able to visit with him, but that's pretty much it. Isaiah won't be able to see him at all during that time. The risk of infection is too great. The chemo they give him while we are in the hospital right before the transplant wipes his system clean. He'll have no ability to fight off anything. Even when he comes home after 6 weeks, he'll still pretty much be in isolation with our family. He won't be able to start kindergarten as planned for at least 3 months after. So that was discouraging as you can imagine. It's okay though, we just want to get him through this with lots of time for school later!

Hello our wonderful church family. We are so grateful for you. We did make it home from the hospital this afternoon, but our little superhero Matthew isn't feeling so well. He's still feeling weak, some nausea, and in some pain. In our excitement to see you, we've decided we may have been a little overly optimistic with our planning for tomorrow. It looks like it will be best for us to stay home as a family and take care of our boys. We're home for a few days then we get readmitted on Wednesday to begin high dosage chemotherapy for 5 days. We'll be there from Weds. until probably Monday. Then we'll be home for about 2 weeks with a couple of outpatient appts. each week until we go back again for 4-6 days of chemo inpatient again. This cycle will repeat for about 4 months then they'll do a bone marrow transplant, He'll be in the hospital for about a month then. They might follow this up with him being on a low dosage chemo pill for about 18 months. Please continue to pray for Matthew's complete cure. As disciples, we are faithful....as parents, we are terrified. Pray that our faith wins out always. Our oncologist is at the top of his field but science tells him Matthew only has a "50% chance and that the next four months will be horrible for him". We have to believe that God has a plan to cure him. I pray that we can show our faith through persistent prayer. Thank you for being there for us. Our greatest need (after prayer) is help with Isaiah during the day while Rodney works and I am at the hospital with Matthew. Pat & Phil took care of him around the clock the first week and Nisha & Doureen took care of him every day this week until late in the evening Friday. We are hoping to find help for Isaiah Weds - Friday this week from about 8:30am - 4:30pm . We are also down to 1 car, so we might have to ask for a ride for either Rodney or myself and the boys on Weds. If anyone can help with any of this, please let us know. Thank You For Everything. We have been so taken care of as always. You are all a great example of Jesus heart and servitude. We Love You! Jodi, Rodney, Matthew & Isaiah

We talked with Jodi tonight. Matthew has been moved to his own room and out of the ICU. He is now in room 7261 for those who would like to send him an email through the hospital website listed below. Matthew is still dealing with an on and off again fever. He is still pretty sedated but did sit up today for a time. Keep the prayers coming!

The scan turned out good, no leakages. Matthew is doing a little better, more alert today. The doctors feel it is just taking time for the liver to kick in and start doing its job. Keep praying. God is good. Thanks, Pat

The Robinsons need our prayers this morning. Matthew's liver has not started functioning. They are going to do a catscan and ultrasound this morning to try to determine why. He does have a slight fever and is on an antibiotic. He'll be staying in ICU for a few more days and he is still pretty sedated. Rodney and Jodi haven't left his side thru all of this. They are holding up well even with very little sleep. I'm sure that is God giving them strength right now. The best thing we can do of course is pray. They can't use their cells in ICU, but messages of encouragement and emails would probably work best. God is still in control. Thanks so much for all the prayers on Matthew's behalf. I know they appreciate their loving church family at this time. Thanks again, Pat

Hello Again, I must start again by Thanking you all for your prayers and support. We believe God is and will continue to answer prayers. Thank you all for the kind words, cards, and gifts. Our hearts have been encouraged so much. We have so much on our minds and hearts as you can imagine and we see your hearts of trying to ease the worry in many ways and we feel so grateful for you. Matthew's surgery went well yesterday. It was as complicated and maybe more so than they expected, but after almost 7 hours they successfully removed the tumor. They had to remove 60% of his liver, but they feel good about how things went. Matthew has been in pediatric ICU since the surgery. We are here with him. We're not sure when they will move us to the Pediatric Oncology unit, they said recently it could be a couple of more days. He has had a fever so they are watching that closely. He also has some respiratory issues, but he has been making progress in all areas. Matthew is still pretty sedated. He opens his eyes and talks for a minute but is mostly in a sleepy state. He nods to show he hears us, but the pain medicine is making him tired. We have had many discussions with the surgeon, anesthesiologists, oncologists, nurses, and other doctors, so we have so much information going through our heads. Overall, I think we're hearing optimistic reports. We have been sharing with Matthew about all of the encouragement from you. Thank You again. If we could ask one more thing of you please......The hospital website has a place where you can go on and type a note to Matthew. It is then delivered to his room on cool stationary just like mail. He was so encouraged last time to get his mail. We would be so grateful if you have just a few minutes, please type him a hello. The website is www.devoschildrens.org In the left column, click on E-mail a patient. You'll need to address it to Matthew Robinson, Devos Childrens Hospital, Room 8408. We send you big hugs on behalf of our little super hero and the rest of the Robinson Family. Please continue to pray for his health and continued recovery. We Love You and Thank God For You! Rodney, Jodi, Matthew & Isaiah

Brothers and Sisters, God heard our prayers. Thanks to everyone for praying so earnestly yesterday. Matthew's surgery went well. He is recovering in ICU thru today and into tomorrow (Thur.) They want to keep him sedated and to keep a close watch on his breathing. His lung exray was good and they did remove the breathing tube. They had to remove 60% of his liver. We know the liver does regenerate itself and the doctors say we can live with 1/3 of our liver. Please keep praying for the Robinsons. Last night was pretty intense for them. They were able to get a little sleep tho. Jodi said they would be sending a more detailed account soon. As for visiting; while he is in ICU Rodney or Jodi can take a visitor in with them. However, Matthew is very sedated so he wouldn't be aware of visitors. I would think just a short visit to the waiting room to encourage Rodney and Jodi would be. They will probably be staying close to his bedside today. Thanks again for being such a loving and encouraging church. Love, Pat

Thank you all for your kind words and prayers. We haven't been able to answer everyone yet, but we are so grateful for your support. Here's where things are at now.... Matthew did not have surgery today as planned, it was rescheduled for this Tuesday instead. After running more tests and getting more detailed scans done, it was determined that the tumor is located within Matthew's liver, not on the rim. The size was determined to be roughly the size of a baseball and is taking up just under half of Matthew's liver. Due to the number of veins that run through the liver, the size of the tumor, and that there is a major artery that runs through the liver, the surgery is considered very risky, so they wanted to have a few more days to prepare. The tumor is cancerous. It appears to be either a reoccurance of the Wilms tumor (kidney) that he had before or a completely separate occurance of liver cancer. The better case scenario is that it be a completely new cancer. A reoccurance of the Wilms tumor means that Matthew's body built up a resistance to the chemo drugs he had previously. That only leaves them with one more set of drugs to use and a 50% chance for cure. If it is a new cancer occurance, it allows more treatment options and a 70-80% chance of cure. Even though that is a better scenario, it also brings to the light that Matthew's body is lacking a natural ability to stop malignant tumors which most of us have. Our oncologist says he'd rather give him a higher chance for cure now though. If the surgeon determines complete removal of the tumor to be too dangerous, he will remove a portion for biopsy and attempt to remove the rest in a couple of months after they have attempted to shrink it via chemotherapy. The treatment plan is expected to be chemotherapy and possibly a bone marrow transplant. As you can see, we desperately need your prayers. We have no choice but to believe that God will heal our son. Please pray for his health, not just right now, but as we continue on in this long medical road ahead. He is an incredible little boy with a strength well beyond his 4 years. If he were talking to you right now, he'd want to show you his muscles to prove it :o) I've attached a photo of the boys. Thank you for loving us. Jodi, Rodney, Matthew & Isaiah

Rodney and Jodi met with the surgeons today and found some new information. The tumor is actually in the liver. They will have to remove part of the liver to get all of the tumor, maybe even 1/2 of the liver. Since the surgery is so extensive, the doctors want to take more time to prepare (study tests, confer with other doctors etc.) so the surgery will take place on Tues. morning instead of tomorrow. The hospital stay after surgery will be approx. one week. Other than this, things are pretty much the same; chemo after surgery, possibly bone marrow transplate, etc. We know they need our prayers more than ever. Let's pray that God will give Rodney and Jodi strength in this time of need and that he will guide the doctors as they move forward to help restore Matthew to recovery. May God bless this family as only He knows how. Thanks, Pat

A new tumor was found during one of Matthew's appointments. He is undergoing tests and a surgery will be scheduled.

Matthew had surgery on August 13th to remove a tumor on his kidney. He is currently in remission.

Matthew will be having surgery on 5/24/07 to have his medicine port removed. Please keep him in your prayers.

Matthew had his last chemotherapy appointment this past week!! He will still have monthly appointments where he has to get hooked up to an IV for an antibiotic and he'll have scans and ultrasounds every couple of months for the next year, but thankfully the chemo is finished!!!

Matthew is doing great! We're so excited for him to be able to move on and be a 3 year old. He started preschool right after getting diagnosed, but we had to withdraw him because he was missing too much school from being sick. Matthew is excited to report that he is starting preschool again tomorrow. He is so looking forward to it.

Isaiah is also doing well. He's a very, very active 10 month old. He adores his big brother and smiles at everything Matthew does.

Thank you for all of your prayers and support. 2006 was tough, we are looking forward to a healthy, exciting 2007.

His scans were clean....no tumor left in his abdomen and the 19 or so tumors in his lungs are gone. The MRI of his brain was clear too, except of some meaningless cyst like spots. They assured us that these are okay and won't cause any future problems.

Matthew needs to continue chemotherapy as scheduled until March, they just need be sure they get all of the cells that they can't see as well. We are so looking forward to March. He handles the chemo pretty well because of the anti-naseau medicine, but it still breaks our hearts to see him get sick when he does.

Hello! Again, we want to start by thanking you all so much for your love and support. Everyone has made this trying time so much easier through all of your help. Thank You!

Matthew is still doing well. He's been so strong. He has made it through about 10 weeks of treatment without too many side effects. He usually gets sick the first day, but this past week was a stronger treatment and he was sick for about 5 days. He has lost some hair, mostly one patch and thinning in the rest of it. Through all of this he is doing remarkably well. He has made many friends of the staff at the hospital. They have a prize box for when the patients have to get a "poke" with the needle each visit, well Matthew somehow walks away with 2 prizes instead of one most times. The nurses answer is that "He's just so cute".

Tomorrow, they are repeating the CT Scans of his chest and abdomen. In August, when he was diagnosed, they removed his kidney and the large 6" tumor from his abdomen, but there were still about 19 small tumors in his lungs. Hopefully, the scans will show that the lung tumors have shrunken or began to disappear. They are also doing an MRI on his brain to be certain there are no tumors there. Please be praying for great results from both of these scans. I expect that we probably won't get the results until our appointment next week. Please be praying for us to not be anxious and worried all week. We will update you as soon as possible.

We did have some good news in the midst of this. As some of you know, Matthew has Neurofibromatosis (NF), a genetic disorder that can cause some issues later in life (mostly small benign (non-cancerous) tumors) or can pretty much cause no issues. There was concern that Isaiah also had this condition, but a specialist confirmed that he does not. Matthew's cancer is unrelated to his NF, it's highly unusual that a kid would be affected by both NF and cancer.

Aside from all of this, the boys are doing incredibly well. Not a day goes by that they don't make Rodney and I smile. Isaiah adores his big brother. Isaiah is almost 7 months old, Matthew is 3 1/2 years old. Matthew is a natural comedian, he is truly hilarious. We hope Isaiah can keep up!!

Thank you again for your prayers. We will keep you updated. I've attached a photo of the boys. Isaiah had lost all of his hair, it's just started to grow back.

Update 08/18/06 - Rodney and Jodi were given a diagnosis on Matthew's cancer. It is a Wilms Tumor. This was the best case scenario so they are very pleased with the news. The doctor said that they have a 75 to 80 percent cure rate with this type and stage of cancer. Please pray for Matthew's tolerance to the chemo drugs and radiation and for these procedures to completely eradicate the cancer on Matthew's lungs and any cells that remain in his body.

Matthew is healing well from his surgery and started chemotherapy on Monday the 21st of August.

The Robinsons are home!!!! If you have signed up for a meal, please deliver it to their house. If you just want to stop in to check on the family, please call before visiting because Matthew may be very tired and sick from the treatments. Please pray for Rodney and Jodi to have continued faith and strength to see Matthew through this ordeal.

To sign up to provide meals for Rodney & Jodi, please send an email to Kelly Mertes or give her a call @ 616 774-2804.