Max went to England
Make-a-Wish Foundation sent Max and his family to England. Follow along on their journey as Brandi sent daily posts and pictures. |
September 2, 20089
Woo Hoo!
There is a little breathing room at Casa de Moses. Max is in full and complete remission. He started school last Monday, and he is feeling tons better these days. His hair is even coming back!!!! He still takes lots of medication and his Chemo treatment won't be done for a couple years, but all in all he could not be doing any better.
His schedule has relaxed quite a bit in the "maintainance" phase which he is currently in. He only has to go to the clinic twice a month now for blood work and infusions. He also only has to have his surgeries ever 12 weeks now, which is faaaar less than before. We are all grateful for that! (Max especially!) Max still has times when he is sick to his stomach or really fatigued. But he is so strong now, and typically has more energy than I do on any given day.
We were able to take our trip to London a few weeks ago, compliments of The Make-A-Wish foundation. Max got to see his castles and we had a fabulous time! Keep watching, I will try to have pics from our trip up by next week!
We have a new house guest at our house. Jenny Taylor is here from Amarillo to help us out so I can get out there and work. She is the niece of my childhood friend Chip. She is absolutely a saint! Hopefully I can generate some income before she starts school at an Art Academy here in the Austin area where she plans on studying photography. Jenny's only been here a few weeks but is definitely already part of the family and fits in perfect in our crazy Moses environment. Both the kids adore her and she and Brandi have really hit it off. I see a long friendship developing there.
For the first time in a while, we can actually see some light at the end of the tunnel, and for the first time that I can remember, it's not a train barrelling down on us! Thanks to the best Oncology Doctors and Nurses on the planet, Max looks like he is going to beat this thing!!!
Hugs from Austin!!!
The Mosi
July 2, 2009 Treatment Update
Max finished the treatment part of Delayed Intensification finally. Shew! That was a rough one but he made it through. Part of the side effects was that his blood counts were to drop, and boy did they! His counts were so low in fact that we had to postpone the final surgery for this phase a couple of weeks until he recovers from the on slot of poisons injected into his chest the last few months. He is scheduled to have his surgery this Thursday the 9th of July. One last spinal tap and intrathical injection into his spinal canal for a couple of months. Those are the roughest days for Max and he tends to dread going (for obvious reasons.) We've also been on lock down here at the house for several weeks to avoid any bugs one might catch randomly in a grocery store or movie theater etc..
Although he is tired and puny from his counts being way down, his spirits are not! He has been so happy and giggly. His only complaint has been that he can't be out swimming and playing during the summer like most kids. We are optimistic that by the middle of July he will be doing all of those things and more.
We go on Tuesday to see his bone doctor to check the compression and "wedging" in his spine. He has actually grown out of his back brace which is a good thing, but we do anticipate another being made for him. Although his posture has improved, it's still in need of support.
We still have tons of T-shirts for sale, don't forget to order one! You guys are the best!
Love and Hugs from the Mosi.
Treatment update June 3, 2009
OK, so.... Max is on the down stretch of Delayed Intensification. What does that mean? Well, we have two weeks left of daily injections. Some are done at the clinic, some are done at home. Max has been reluctant to have me do the injections at home since his severe allergic reaction during a routine visit to the clinic a few weeks ago. Thankfully, we have a home health nurse to come and supervise me during the procedure so Max feels more comfortable about the whole thing. We also oral meds to take daily for the rest of this phase. The week following Father's Day, he starts the first portion of Maintenance, which should be a walk in the park compared to the last 6 months of his life. That is definitely something we are all looking forward to.
He has been gaining a little weight back and his apatite is good. He doesn't complain at all and has possessed the strength and bravery of 10 men throughout his treatment. I wish I could take credit for his courage and toughness. I, however, have not kept it together as well as Max has. Those of us close to him, me especially, struggle daily to keep our anger and frustration in check. The helplessness of not being able to protect my son from such a monstrous foe has brought me to my knees more than once. I find myself frantically looking for answers and strength when I step back and look at how Max has been handling this whole ordeal. What a remarkable kid! So..if he can deal with it, by God, so can I.
Thanks again for everyone's messages, donations, and prayers! We love you guys. Max is winning!
Treatment update May 1, 2009
Max started his Delayed Intensification phase yesterday. The day started with the injection of a couple of new drugs through his chest IV and then day surgery. The surgery included a spinal tap, a chemo injection into his spine and two "PEG" injections. One into each leg. He was pretty darn sick and is still trying to recover from his long day.
This phase is super intense, hence the name. The next couple of months are going to be really hard on him. His blood counts will be dropping fairly rapidly and he gets to look forward to a lot of pain with lots of nausea and constipation. There were a couple of days he was hoping to spend at school with his friends, but with all the viruses going around, he unfortunately will be locked down at home. We are uncertain if he will even get to attend his own benefit next weekend. (Crossing our fingers).
Will let you know if anything changes. Thanks for all the nice messages. We read them together almost every day!
April 20, 2009 Update
Hi gang!
Max finished his 3rd phase of treatment, "Standard Interim Maintenance." It wasn't without some tough moments. He went to the clinic for the last of his standard Chemo treatments for this phase on Friday. It was supposed to be a fairly routine injection into his "port" or chest IV of two types of Chemo. One is VINCRISTINE which often causes some pain in his legs and jaw. Max is pretty good about fighting through the painful side effects without much complaining. The other injection is of a drug called METHOTREXATE. Methotrexate is another Chemo med, Max has had many times already. This drug takes 10 to 15 minutes to administer. Almost immediately after the injection started, Max stood up and screamed as loud as I have ever heard him scream, "I CAN'T BREATH!!" "HELP ME, GET IT OUT, I CAN'T BREATH!" About then he started vomiting, turned dark red in the face then stopped breathing! We yelled for nurses and his doctor who all came running. We rushed him into a "crash room" where he was stabilized. His lips, cheeks, and tongue started swelling and it was
apparent he had some sort of allergic reaction. He was admitted into the hospital right away. He slept most of the day and feels tons better now. His Oncology team is proceeding with extreme caution and is doing everything they can to determine what he reacted to during his injection. Methotrexate is a staple drug and is given through his IV, orally, and intrathecally (spine injection) throughout his treatment. So, we will be watching very closely to make sure that doesn't happen again. That is necessary for his sake, and ours as well. I lost 10 years off my life after that little episode and can't afford any more!
He has a couple of weeks off before starting "Delayed Intensification" which is for 57 days long and will begin on April 30th. He starts with Day Surgery that day. Another fun day of spinal taps and intrathecal injections. This time around is supposed to be pretty rough.
Overall, Max is responding great to the treatment. His blood counts have been strong and he is handling all the side effects like a real champion!
Keep praying for him as he fights the fight. Thanks for everything! We love all of you so much!
The Moses Crew
March 30, 2009 Update
Ok, here is the latest news with Mr. Max. He is in the 3rd phase of Chemo. He’s still a skinny bean pole, bald and gangly, but doing great! His blood counts are good. He spent several weeks doing Physical Therapy. His PT said she has never seen a kid with Leukemia doing this well this early in treatment. Hopefully that isn’t just hot air, but it was nice to hear all the same.
This phase lasts for 57 days. The good news is he only has to suffer through one surgery which is on day 31 this time around, which is on April 7th. (a very nice break from the weekly torment the last 2 months.) On day 31 he gets a lumbar puncture (spinal tap) to test the cancer cells in his spinal canal and he will also get some Intrathical Chemo again. The rest of the treatment is done through his “port” (chest IV) every 10 days in the clinic. The drugs are pretty intense, but he seems to bounce right back from each injection.
He has been wearing a body brace for several weeks now to strengthen his back and legs. He is already 100% stronger than he was when we first got it. He can actually jump around, throw a football and stand his ground in a tickle fight. He is far from back to his normal athletic self, but his daily improvements are amazing!!
Don’t forget to leave him a message on his blog.
He loves to read them.
Original Treatment Posting
After weeks of on and off back pain we took Max into Dell Children’s Medical Center early in the morning on New Year’s Eve Day. After blood work and an MRI, he was found to be anemic and there was a “mass” or tumor found to the right of his spine near T6 and T7. He was admitted immediately. Two days later, we got the diagnosis: Acute Lymphoblastic Leukemia. Talk about being hit by a train!
He spent the next two weeks in the hospital where they started his Chemo-Therapy. His first stage of treatment or the “Induction” phase was the worst. It was 29 days of poisoning Max’s body to kill the “blasto” or Leukemia cells. The Chemo doesn’t distinguish between blasto cells and normal blood cells, thus his blood counts dropped into the cellar. He basically spent 3 weeks in bed trying to cope with weekly bone marrow biopsies, constant vomiting, severe nose bleeds, stomach cramps and diarrhea. We made it through, and he was awarded a two week break from all treatment while his blood counts recovered.
He is currently in the “Consolidation” phase of treatment. The meds are less intensive and he is feeling tons better. He does have the puffy face and his hair has fallen out, but he seems to have adjusted to his new look and actually seems to like being bald. Who knew?!?! We go in once a week for a spinal tap or “lumbar puncture” to test the Leukemia cells in his spinal cavity and to get IT or “Intrathical” Chemo injected.
The Chemo has caused some bone density loss in his vertebrae. It’s making his spine “wedge” or compress. So we go in on Monday, Feb 23rd to be fitted for a body brace that he will have to wear for the next 6 months. We also start Physical Therapy next week to try and strengthen his back and other muscles which are showing signs of atrophy.
He will be out of school the rest of the year and is currently in a homebound program where he works at least 4 hours a week with an actual teacher. He and Dad do the rest of his work together. If he continues to respond to treatment, there is a good possibility he will get to start 4th grade in the fall with all his friends again.
| Help Max fight Leukemia
Donations can be made at any Wells Fargo to the "MAX MOSES LEUKEMIA FUND." or click on the button below.
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